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

Pleasure Trip or Guilt Trip? Leaving a child with special needs behind

It seemed like such a great idea, back in January when I solidified my plans. I hadn't been back home to New York in six years. My step-mother is having a 75th birthday celebration, and I decided that while I was going to Long Island for that I could also visit relatives in Northern Virginia, as well as an old college friend in New York City.

That was before now, when I am faced with the challenge of packing for a semi-formal event, choosing clothes for the heat and probable humidity in Virginia, and dealing with a forecast of rain in New York City. Selecting shoes I can walk in, and clothes that don't scream "I'm from the Northwest" is more difficult than I anticipated. Not to mention remembering all my toiletries and medicine. When did I become so high needs? Eye gel and drops, thyroid medicine, nasal sprays, and on and on. Oy!

And leaving a family with a child with special needs behind requires a whole other layer of planning. I have been surprised by the number of people who, when I tell them about my trip, ask, "Who is going to take care of Sayer?" I look at them sideways and say, "Well, my husband, Dan" and then I quickly add, "We also have some caregivers lined up, Jacob can help, and Dan has an understanding boss." Ah, yes, it is our good friend, guilt, peeking its head up above the sloggy northwest spring soil.

I was a tad of a wreck yesterday, when I decided that I would tell Sayer the news. Because Sayer has pretty intense anticipatory anxiety, I decided to wait until two days before I left before I told him. I used my "Make-A-Schedule" software to create a ten day schedule, complete with caregiver visits, swim lessons and - TA, DA - the visit to the doctor to get his arm cast off.

I strategically presented the schedule to him while he was eating one of his favorite meals, Chinese food from Safeway [I know, I'm a New Yorker, it's sacrilegious but there are NO Chinese take out joints around these parts.]. Anyway, Sayer was rather blase about the whole thing. He asked if Jacob was going (no) and if I was coming back (yes) and that was about it. So now it's "Mom is going on a trip and will be back in ten nights."

I think I was the one suffering from anticipatory anxiety just dreading telling him, but he's cool. I think, actually, Sayer knew something was up. There were clues like folded clothes on various surfaces in my bed room and me being a bit snippier than usual. He's likely relieved to know what is going on. I probably should have told him sooner. OK, guilt, touche for you. Even when it is OK that I go you still wrangle your way in.

Wish me bon voyage. The good news is once I'm gone I don't fret much about what I'm leaving behind. I will be in and out of internet availability but will do my best to do a few posts next week. But if that doesn't happen I will NOT feel guilty!

Pam's Story: Helping a family through a meltdown

There is a Winco [grocery store] close to our home. Great prices, but crowded on weekends. I try to avoid weekends whenever I can. One Sunday afternoon, though, I had nearly nothing packable for the kids' lunches the next day so I had to go. It was about four in the afternoon.

I walked up towards the entrance of Winco and it looked just like a scene from the movie, "The Birds" but with no birds in sight. This mom had a screaming and kicking 8 or 9 year old boy held around the waist. The boy was looking towards oncoming cars, who, had stopped, but the mom was waving her arm at them and yelling "Move on, move on." She was also yelling a child's name and saying "Go to the car." The boy had on sweat pants , sweat shirt, and simple hair cut. He was not using any words, just noises. I knew right away that he was on the autism spectrum.

I approached the mom with hand extended and said, "Hi, I am Pam, the mom of a young adult with autism." The boy stopped screaming and kicking and looked up at me while the mom shook my hand. He then turned around and was hugging his mom tightly, (gotta avoid this strange lady may have been his thought). I told the boy in a soft voice, "Hug Mommy, hug Mommy." I told the mom, "I am here to get you out of here." Then I asked her, "Where is the other child? "She said, "At the car with the groceries" How old ? "13". "OK, she is fine."

I then told the mom, you link one arm and I will link the other arm, and we will walk together to the car. And I did my favorite trick, which is to sing a song. Better to act weird than to be dangerous, I say. So I start singing the song from Peter Pan (tee dee, tee dum, etc. ) but a few words into it I forget the words and so I start singing "We're off to see the car (wizard) the wonderful (car) of (car)". The child is so surprised to hear me sing that even though he is starting to kick some again, it is all OK as he is kicking forward and we got to the car just fine with no one hurt at all. The child went into the back seat and curled up into the fetal position, which reminded me that as scary as meltdowns are for adults, the child, too, is feeling scared/overwhelmed, on the inside, too.

I assured the teen waiting in front seat that no teens saw me sing on the way to car. Mom was shook up and breathing hard and I had her take some breaths and told her, we are all OK, everyone is safe, and oh, by the way, try to come to a SEPTSA [Special Education Parent, Teachers, Student Association] meeting.

I then bought my own groceries and went home where husband ,Ed, sang for me the correct words to tee dee, tee dum from Peter Pan. I love that guy.

Nesting Instincts: Sharing Our Stories

This week I am starting a new feature, "Nesting Instincts: Sharing Our Stories" This section will have stories from readers about how they have are coping with disability in their family. I don't like to always be the only one in the room talking!

I'm still on a learning curve of how to do this; I'm going to have each story be a separate post, and each will have a link under Nesting Instincts (on the right hand side of the blog.)

I encourage readers share their stories by leaving a comment at the bottom of a post or e-mail me directly at: csfreedman@gmail.com . Please let me know if you would like to be anonymous.

The first story is from Pam; coming right up.

The Imperfect Parent: Mix special needs and stir

Perfectionistic Parenting is an excellent blog post found in Dana Sherman’s Kids and Character blog. In it, Dana encourages mothers to aim to be “good enough/successful” parents, rather than perfect parents. She writes:

“Good enough/successful parenting arises from the realization that you are human and you only need to try your best, not be the best. Perfectionist parenting arises from insecurity and fear of not being good enough. Separate what your child needs from your perception of what others think of you: other mothers, your husband, family members, friends, the media. What matters are what your child thinks, wants, and needs.”

The pressure to be perfect is often a “double whammy” for parents of children with disabilities. Parents of children with special needs have additional expectations from therapists, teachers, medical specialists and even parent advocacy and support groups. They are in our rear view mirror as we go about our daily lives.

I recently participated in a panel on disability in the family for a Family Diversity class at Washington State University-Vancouver. My friend and fellow panelist “M” said that if her family followed every recommendation from therapists and professionals, they would spend 20 hours a day of occupational therapy exercises, speech exercises and so on. She realized when he son was young that she must decide which recommendations to adhere to and which to jettison to make room for family time. With that realization, “M” became a “good enough parent.”

I struggle with being a “perfect autism parent” at times - no, make that almost all the time. The recent talk led by Dr. David Pitonyak's lecture on Dealing with Difficult Behaviors reassured me that making room for “joy” – my children’s and mine! – was an essential part of being a good enough parent.

However, without in any way intending to, Dr. David Pitonyak reminded me that I do not use Person First Language - the “politically correct” language within the disability community. Parents are told that we ourselves, as well as the rest of society, should portray our children as people first, not as defined by their disability. So, really, rather than calling Sayer an autistic child (a real “no, no”) OR “a child with autism” (which I do) I should be referring to him as “a child who experiences autism” (which I don’t).

Dr. Pitonyak quite naturally used this language, as did many of the parents who asked questions. As I listened I struggled not to feel guilty for my own semantics.Yet,parents with “typical” children don’t need to think about whether to say “clarinetist Susie” versus “Susie who plays clarinet” versus “Susie who experiences band.” By refusing to join the People First Language bandwagon I am being an imperfect parent – or, rather, a parent experiencing imperfection while mothering her child who experiences autism.

So, let’s all strive not be so hard on ourselves or other parents. Instead, we must embrace our good enough parenting abilities. I’d love to hear stories from others about the pressures they feel to be perfect parents, and how they have coped.

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.

Confessions of an Autism Walk-a-thon Slacker

April is autism awareness month, and Sunday is the Autism Walk-a-thon in Portland, sponsored by the Autism Society of Oregon. This year it was easy for me to come up with my excuse. The march is at Oaks Park amusement park and Sayer would want to go on the rides, but he can’t because of his broken arm. I don’t remember the excuse I used last year.

You see, I have never been to an Autism Walk-a-thon and I don’t plan to go. There is something about the idea that catches in my throat, although I have plenty of friends who plan to go with their families. It’s probably because I have ample autism awareness in my life. After a week of managing Sayer’s anxiety with picture schedules and sensory integration therapy, liasoning with his school team, plus doing my own work and handling other family responsibilities, I just want to go on a quiet hike in the Columbia River Gorge.

There is another reason I always avoid these walks. I am active in parent advocacy groups and socialize with other families impacted by autism – I certainly swam ashore from the river of denial years ago. But, I dread seeing the information booths and biomedical evangelicals that hawk their cures at autism events. At this stage of my life, I am wary of what my friend “T” calls the autism industry. Our family has tried the biomedical route without success, and I believe these treatments have opportunity costs for parents, such as dashed hopes and financial hardship. It makes me groan to see parents who are convinced otherwise.

So, this Sunday you will find our family enjoying our own walk-a-thon amidst the beauty that is the gorge. I’m not repentant. Middle-age means never (or rarely) needing to say you’re sorry.

Caregivers: Got to get them into our lives

Caregivers. When our children are younger or first diagnosed with a disability that term may not resonate. But as our children get “asked to leave” child care centers or family child care homes, or we find that we can not leave them with the teenage gal down the street while we go to the dentist, then we take another look at the term. Eventually, we realize that finding people to take care of our children when we are not there can be a Herculean challenge.

For my mom friends and I, identifying, arranging and managing caregivers is a part-time job in itself. Although we may be able to use group child care options, more often than not our children need one-on-one care providers. Mothers who work need care, clearly, for when they are at work. But mothers who work from the home also need respite – to renew themselves, go to medical appointments, carve important “couple time” or spend time with their other children.

But, of course, we need more than warm bodies. We need to find persons who can not only keep our children safe but also, hopefully, engage them, encourage playful interaction and foster independent living skills. I have heard stories of mothers training caregivers for a few months, only for the care giver to move out of the country. I also know moms whose children have had the same caregiver for years, and wouldn't miss that caregiver's wedding for anything.

As our children get older, we see that we may need caregivers for a good while, perhaps into and through our child’s adulthood. Our children can not be left alone at a certain age, like “typical” children. This fact may be hard to swallow when our children are young and we are living day-to-day. However, it is important to realize that caregivers enrich all our lives. They can be an important part of your child’s Person-Centered-Planning team, or bring an important perspective to IEP meetings.

Our Caregiver Story

For our family, we have two steady caregivers for Sayer (three if you count our on-site fall back, brother Jacob) and each bring different gifts to our lives. We found both “B” and “M” through word of mouth recommendations from other families. “B” has worked with us for over two years. She is always up for taking Sayer on outings such as to the movies, the mall, miniature golf, or her friend's farm. Her whole family has embraced Sayer and he plays with her nephews, attends family birthday partie, and goes to “B”'s parent’s house on occasion for dinner. Since we have no extended family nearby, we really value these kinds of interactions. “B” also stays at our house for the week-end a few times a year, so Dan and I can get away. As the Master Card ad goes, “Cost of a week-end alone at the beach: Priceless.”

My friend “L” introduced us to “M” over a year ago. For the past year, “M” has met Sayer’s bus on Tuesdays and Thursdays and been his companion for two hours in the afternoon. Sayer and “M” go on scooter rides or walks,unless there is a torrential downpour or snow - and sometimes even then! “M” also helps Sayer do homework and straighten up his room. He is a true buddy for Sayer, and he understands how to manage Sayer’s behavior, since he works during the day at school with another child on the spectrum. He can draw a visual schedule on the fly – a very useful skill!

Sayer is always counting the days until “M” or “B” come – we hear “Two more nights and ‘M’comes” or “Five more nights and play golf with ‘B’ a lot. How lucky we are to have them both!

How do we find these important folks?

Often, we look to those who already interact with our children or others, such as special education instructional assistants or recreation aides/mentors. Or, we scour Craigslist for ads posted by caregivers; word on the street is that results are mixed with this tact.

A strategic, well-organized way to go about adding caregivers to your family’s life is to read A “Stranger Among Us: Hiring In-home Support for a Child with Autism Spectrum Disorders or Other Neurological Differences. In this book, author Lisa Ackerson Lieberman, a counselor and mother of a child on the autism spectrum, discusses in detail how to identify your family’s caregiving needs, recruit, evaluate and hire candidates, and effectively manage them once they are hired.

I highly recommend this book, although to confess, I have not used many of Lisa’s strategies to find a broader base of caregivers than those few we have. I know we could use more options; sometimes I have to miss meetings or other events if my three “go to"people are not available. But, to be honest, I’ve had a hard time mustering up the energy to do find potential care givers, explain Sayer’s idiosyncrasies and strategies to manage his behavior, and invite additional people to witness the goings on in our homes. I know it is a chicken or the egg issue. If we had more caregivers I’d be less prone to burn out. But I’m too burnt out to find other caregivers. Is this just me?

Share your caregiver stories

Let's share our caregiver success or horror stories, along with tips and suggestions for using caregivers through our children’s life span. If you send them to me in the comment section below, I will compile them and add to the blog – we can create our own caregiving support network.

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.