Escalation

      Recently I had to deal with a particularly annoying circumstance in which a bank deposit we had made did not appear in our daughter's RDSP for over a month. We had made the mistake of trying to deposit a grant she had received from Endowment 150 through the branch, an error that we will not repeat, I can assure you. Several emails, half a dozen phone calls and the situation was resolved. But it was a month-long process; a month that seemed especially long because of our daughter's daily inquiry about it. One thing I noticed was everyone I wrote to or talked to kept mentioning "escalate" as in "you wish to escalate your concern" or "your matter has been escalated" or "this is an escalation". I found the use of this term very off putting. I looked up the customer service definition and here it is: "In customer service, escalation refers to a situation where a support agent must deal with a frustrated or angry customer who, in turn, wants to get in touch with a senior agent to resolve their issue." sprinklr.com

     To my mind suggesting that someone is frustrated and angry before they actually are frustrated or angry is a good way to ensure that they will indeed become frustrated and angry. I found their use of that term worsened the situation for me. I had been polite but clear about how disappointed we were; that this had lessened our daughter’s trust in them but that all we wanted was the cheque to appear in her account. If they hadn’t lost the document, it was simple really, just post the transaction and be done with it. It was not as easy as you would think!

     I do find that the words we use are so important. Jargon or words or expressions used by a particular profession can be very confusing and do not always lead to clear communication.  And while the words escalate or escalation may seem apt in the world of customer service, I for one don't find them helpful as a customer. Finally, all that matters is that the money is in the bank!

 

Church

     Our daughter received two gifts from the church that she attended while in high school and beyond; one years ago and the other, just last week. One was that it was the place where she found acceptance and friendship at a time when there was not a great deal of that in her life. High school was difficult because of seizures and constantly having an Educational Assistant by her side. The EA was necessary for her safety but her presence seemed to discourage relationships with others. The youth group at WRCC was friendly and inclusive and even when the youth pastors changed the group was one that she counted on. We then went to the church services on Sunday that were also warm and inviting: the music was modern and accessible, the words were projected above and easy to read, dress was casual and the leadership there was, and still is, smart, funny and full of wisdom and humility. Our daughter felt at home there.

     The other is a cheque that she received just days ago as part of the giving of their church congregation to something called a "Benevolent Fund". This is how deserving people in the community are assisted to reach their goals or to improve their situation by means of a monetary gift. I can tell you that I was blown away by the kindness and generosity of this Christmas blessing bestowed upon our eldest daughter. As we have not been attending church there for a while, these folks had not seen our daughter lately but took it upon themselves to let her know that she is missed, appreciated and thought of--- what a kind thing to do--- especially in these times of economic uncertainty for so many!

     I am reminded daily that there are good, kind people out there; some you meet at church and some of them you meet elsewhere. Kindness, the intention to be kind is part of their way of life. The Dalai Lama, the spiritual leader of Tibet, has been quoted as saying: "My religion is kindness." Today our family is reminded that that is true of many others as well--- folks in our very own town. Thank you WRCC!

Special 2

      I'm sure that you have experienced wanting to be in two places at the same time. It happened again to me on Monday: the public hearing for Harmony was taking place at the same time as our daughter's Special Olympics basketball practice where I have been volunteering.

     Harmony is a cause that has been at the forefront of our minds for over a year now. We were determined to see it through and support the amazing folks at UNITI who have been championing the case for inclusive, affordable, supportive housing for disabled folks and others. Special O basketball has been short of volunteers lately and without a safe ratio of coaches & volunteers to athletes, the program can't run. As it turned out we got to both places and were able to register our support for Harmony while also getting to basketball practice.

     Special Olympics basketball has become so important to us over the years. We have seen the coaches work miracles in increasing skill levels, confidence and camaraderie among these dozens of athletes who range in age from eight to fifty eight. For some of the athletes this is the one activity in their week that they really look forward to!

     And as for Harmony, we have been watching and waiting and trying to get the word out. This issue is so important to people like our daughter. The folks at UNITI have been working tirelessly to get this much needed project off the ground. We are in awe of their energy, dedication and unrelenting desire to see this community built. Now their hard work has paid off; Harmony will go ahead!

     Anyway I'm glad that we were able to get to both places. It was well worth the drive and so rewarding. I am humbled by all these special, amazing people at Special Olympics and UNITI; they are heroes and I applaud them. Thank you all for all that you do!!

Marriage

     My eighty-eight year old father recently had a bout of food poisoning or something like it and was in bed, nauseous, dizzy, sweating and having diarrhea. Before we knew what it was, it seemed serious. I ended up calling 811 at the suggestion of a friend and had a productive conversation with a nurse. We came to the realization that perhaps calling an ambulance would be best. My father did not want to go to the hospital and let us know it in no uncertain terms. So my mother did something totally unexpected--- she got into bed with my dad to talk to him and offer comfort. It seemed like the most natural thing in the world to her and to me, it was beautifully sweet. It was a photograph that I wish I could have captured and it is a picture that will stick with me forever.

     When I take my parents to church on Sunday they often hold hands and seem so content to be there together, sitting side by side, singing together, as they have done for almost their entire lives. To see my old dad, unable to stand for long, standing and loudly singing "I Vow to Thee My Country" with my mum at his side brings tears to my eyes. Again I wish I could preserve these images forever but I will have to be content with the ones in my mind’s eye.

     There is something so lovely about a marriage that has lasted decades and has withstood the rigors of life. They haven’t had perfect lives or a flawless relationship, but to me they represent faithfulness, patience and perseverance. Their story is not yet over but they show us all what it takes to be there until the end. Just love.

First

      The child born after a special needs child, the sibling of an intellectually or physically disabled child sometimes feels that they come second. I know that our younger daughter has felt at times like she is less loved, less attended to and at times more burdened with her sister's disability than she should be. An informative piece published some years ago in The Washington Post detailed this phenomenon in an article entitled "Eight things siblings of children with special needs struggle with". The author, Jamie Davis Smith, a parent of three typically developing children and one daughter with significant disabilities had this to say: 

“Of all the things my children experience that I never did, their experience of growing up with a sister with significant disabilities is something I struggle to understand, even as I watch it unfold daily.”

Here are the eight things:

#1. Feeling like they need to be perfect. I know that our younger daughter has set impossibly high standards for herself. Throughout elementary and high school she strived for the highest marks and was devastated if they weren't forthcoming, which of course led to stress and anxiety.

#2. Feeling like they can't express their feelings. Our younger daughter has felt embarrassed by her sister and has felt angry with her at times but also unable to express these feelings openly. 

#3. Having a different idea of family and home. There have been times when our younger daughter did not feel comfortable describing our family or the challenges it faced to others. 

#4. Feeling as though their problems are minimized. When a sister is facing possible serious life-threatening seizures every day, our younger daughter's typical issues felt small and insignificant and therefore not worth sharing.

#5. Feeling isolated. Our daughter felt alone in her situation, felt overwhelmed with her feelings and was unsure about bringing friends home.

#6. Dealing with intolerance early and often. I know that our younger daughter has heard others disparage her older sister by calling her a retard or a spaz. This brought up a deluge of different emotions, many of them conflicting.

#7. Feeling like they are asked to help too much. Most seizures that our older daughter had were witnessed by us and therefore our younger daughter was called upon to help with timing the seizure, finding rescue meds or getting help. She admits now to this being traumatic at times.

#8. Feeling like they must grow up too quickly. Our daughter often felt like she needed to keep an eye on her sister even though her sister is 4 years older. This made her feel like the older, more responsible sibling.

     It is not easy growing up these days, even less so when you are the younger or even the older sibling of a child with an intellectual or a physical disability. As parents all we can do is the best that we can and offer and ask for support whenever it is needed. Easier said than done I know, easier said than done.

Social

      As I've previously noted NLD or NVLD or Nonverbal Learning Disorder is not an aptly or even helpfully named disorder. Our daughter is terrifically verbal sometimes to the point of frustration, if I'm being honest. The disorder's name refers to the inability to understand nonverbal communication rather than being nonverbal, in case you are unfamiliar with it. Anyway we have been returning to social situations such as going to church and family get-togethers. There our daughter's social skills can shine or not. Mostly they shine. She remembers people's names, the names of their children or pets, as the case may be, perhaps any physical ailments they previously mentioned. As a five year old she once walked up to the Rotary president's wife after meeting her at a previous meeting and said, "Hi Sheila! How is your arm feeling?" or words to that effect, noting now the absence of a cast on the lady's arm.

     Getting back to church is wonderful after being away and watching on-line. It's great to actually see one another in person finally. I heard from one of the church elders that our daughter had admonished her for getting up on a ladder when her husband wasn't home. This lovely woman, a retired school principal, agreed with our daughter wholeheartedly (she too was now wearing a cast on her arm) whereas I was not sure that our girl should be giving safety tips to this nice lady.

     Regardless of the label we give our various strengths and shortcomings, being in community with other people is important to us as human beings. As much as introverts like me enjoy being alone, it does us all good to hang out with others. And whether we're good at remembering people's names like our daughter is, or not (like most people) we can all benefit from the presence of others in our life. The pandemic may have shrunk our various social circles but it can also expand our appreciation of being with others, if we let it. 

 

Mums

     Every once in a while and not often enough, I get together with a couple of friends. We share a meal, maybe coffee or a drink and talk about our lives: our children, husbands, jobs and extended families. There is an easiness and a familiarity that makes these visits so appreciated by me. We laugh and sometimes cry but usually laugh. This time together is a treat that I look forward to profoundly. 

     We met at Special Olympics or Challenger Baseball I think. There are always many mums and dads at these games, bringing their kids, staying to watch, connecting with other parents and family members. The parents who volunteer as coaches are the ones I hold in the highest esteem. I am truly humbled by all these folks and their resilience and courage. Parenting a child who uses a wheelchair, leg braces or one who is profoundly autistic seems beyond my capabilities. This is where we met.

     The women I befriended have daughters like me; their girls have similar skills and challenges. And when the idea for a book club for our daughters came up we all agreed. It would be the perfect way to expand our kids’ reading skills, social skills and have fun at the same time. Brilliant eh? It is. Our daughter loves it and looks forward to our get togethers which have expanded to include birthday dinners and a Christmas cookie exchange. They are her friends. And by keeping it small we have kept it doable and relatively easy to schedule.

     I look forward to any chance that we mums have to be together. There is something about being with people who get it that is so comfortable and supportive. We talk about our challenges and our triumphs, the worries and the rewards of parenting disabled young women. It is not easy at times. But every time I leave one of these gatherings I feel lighter, brighter, more able. And that makes all the difference.