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. 

Perfect

      In my opinion perfection is over-rated: there is enough anxiety and worry around without us adding perfection to the mix. I have seen first hand the price young women pay when striving for perfection; it can't be done! However there are occasions when a day passes and I think to myself "What a great day; it was perfect!"

     My perfect 24 hours started with a wonderful evening spent with a cherished old friend. We walked down to the beach, had a great meal with a lot of laughter and enjoyed it tremendously. My evening ended with a couple of kind friends dropping off a few Krispy Kreme doughnuts. I was smart enough to save mine for breakfast the next morning! My day continued with a lovely church service, some time in my beautiful garden and an amazing dinner with my two lovely daughters....What could be better? Nothing really but the point is that so many days, if lived in the moment without fear of the future and regret for the past could feel just like this day. I had no agenda, was open to the moment and so fully present; hopeful, content even happy!

     Perhaps turning sixty-five had something to do with my mood. Regardless it was as wonderful a birthday as I could hope to have. I hope that you have a "perfect" day today!

 

Stella

     We just welcomed a new puppy into our household which is a joyous, chaotic, busy and boisterous undertaking. Our girl Stella is just 12 weeks old and as a mini Irish Doodle she is the epitome of cuteness: fluffy, small, full of personality with a mischievous streak a mile long. I am not going to tell you that she is brilliant or knows everything about the world around her. She doesn't. She didn't know how to climb stairs or that wasps will sting you if given half a chance. But in the two weeks that I have known her here's a few of the things that even an old lady like me could learn from her....

1. Life is short. Lie down on the grass, in the grass, with the grass and enjoy it. There's nothing better! It's why God invented grass!

2. Summer is even shorter. Look up every chance you get and notice the sky, the clouds, the birds and the bugs. It's the best. And it might not last long.

3. Keep up to date with your "I love yous". Everyone doesn't always appreciate the affection you have for them or how you express it in the moment but that's okay. When they need it they will remember your kisses and hugs and feel better for them.

4. Sharing is so important. Especially if you have a much bigger big sister named Blue. Let everyone play with your toys. Let everyone eat your food. Let everyone drink your water. When they have extra, chances are they will share with you too. It's worth the gamble.

5. Take time to rest. It's essential that you get enough sleep. Whenever you feel like it, just stop and lie down. And if someone else wants to snuggle with you, so much the better. If anyone objects they can walk around you. And they will.

6. Listen, listen, listen. A lot of the people around you know a thing or two about the ways things work. If someone says "sit" go ahead and sit. It can't hurt and there may be a treat in store for you. You never know unless you try!

     Anyway we are thrilled with Miss Stella. She is the answer to our eldest daughter's prayers and a marvelous addition to our family. Whoever said that a puppy is a lot of work wasn't wrong. But our girl Stella is making all of that effort very worthwhile. In case you can't tell we love her already!

Lauren's Story

Pals

     Both of our daughters started new jobs this month. Our youngest now works at a nearby convenience store and she likes it. The store is busy and the people she works with are nice. Our eldest who has an intellectual disability, has been partnering with WorkBC and through them has found a job that is not convenient but it is fun! She is working with horses and people at a therapeutic riding organization called Pony Pals in Delta and she loves it! HandyDART is getting her there and back everyday and the other women who work there are kind so it's great. 

     The resume and interview workshops offered by WorkBC were a big help. The director of the organization was very impressed by our daughter's preparedness and attitude. Although cleaning stalls, grooming, feeding and watering horses seems a long way away from house and dog sitting, which is what our daughter has been doing lately, it is a perfect fit. It is the connections with others, both human and animal which make for enjoyable and fulfilling employment.

     The therapeutic riding association where she now works offers riding and training in a calm, accepting environment and also education about equine health. The children and youth who attend have access to lovely, gentle horses and knowledgeable staff. Our daughter longed to reconnect with horses after having a pony as a young child so she is really happy about this placement. The work is physical and satisfying, the environment, friendly and inclusive. The only down side is that the commute is long compared to what she is used to but she is making good use of the time and enjoying the novelty of public transportation. 

     So far it looks to be a busy summer of work for both our girls. We are grateful for the opportunities given them and proud of the contributions that they are making. We know that every experience, positive or not, teaches valuable life lessons. And a big thank you to Munisha and Lisa of WorkBC for their diligence and kindness. We appreciate you!

"If I cannot do great things, I can do small things in a great way." Martin Luther King Jr.

     

Trust 2

     Whenever I think of "finances" my eyes glaze over: investments, taxes, dividends, stocks, mutual funds, even planning and wills....Ugh! You'd think something as vital as dollars and cents would hold my attention but it doesn't. But one of my sisters-in-law mentioned how it important it is that families with a disabled child investigate something called a Henson Trust. So I did. The disabled or differently-abled of the world are usually always under-employed and therefore often live in poverty. This is not a happy reality for parents to consider.

     A Henson Trust was named after the man who first fought and won his appeal to allow his disabled child to keep her disability cheque despite having benefitted from a trust that he had set up for her. His daughter Audra would not receive any legal claim to the trust but it could potentially pay for her expenses while allowing her to continue to receive disability support payments. I discovered a very helpful document published by TD Wealth that fully explains this trust called "Estate Planning with a Henson Trust". I am sure that your bank probably publishes something similar. It covers the pros and cons in an easy five minute read. The benefits to our disabled daughter are obvious. One of the problems of a Henson Trust is finding a trustee whose interests are not in conflict with the trust such as a sibling. As with all things financial and legal, the assistance of a trusted professional is vital.

     My largest worry as a parent of an intellectually disabled child is her financial future. Anything I can do to ensure her security after my husband and I have died is of the utmost interest to me. And sixty-five is looming nearer! So while I generally don't want to think about money, wills and the like, this topic, a Henson Trust is something that I am investigating further. And the sooner the better! Thanks Melanie....

Work 2

     Our eldest daughter has been partnering with Work BC for several months since being laid off from her previous and up-to-now only job as a greenhouse worker. They have provided workshops regarding resume writing and interview skills as well as a complete vocational and interest assessment. They really have been very attentive and thorough! As she has decided to work in the area of pet care going forward, there is still much to learn and experience to gain. My husband and I have been life-long dog owners but there are practical health and safety issues to be considered. Several small but regular cat-sitting and dog-sitting jobs have filled the time in between SOBC basketball, long walks with our own dog and volunteer work. Our daughter now truly feels ready to begin the next chapter of her life.

     Yesterday she spoke to me about how difficult it is to be atypical in a world where differences are not always celebrated. As a young woman with an intellectual disability, our daughter knows that what is most important to her is to have meaningful work: a job with regular hours where she can feel valued and make a reasonable wage while still enjoying the small pleasures life can offer like friendship, family and time to enjoy them. And while she is so appreciative of the work that she has done so far, she is ready, willing and able to do more now. My husband and I are proud to have raised such a well-grounded, friendly and hard-working young woman. We're all looking forward to what comes next!

UNITI: Inclusive Housing

One Again

      On this day in 2018 our daughter was one year seizure free. On February 7th, 2022 our daughter will once again be one year seizure free. What is it about the month of February I wonder? This time the happy day falls on our return to Special Olympics basketball after an over-long holiday break due to COVID restrictions. Our eldest will use this opportunity to share some Purple Day bracelets with her fellow athletes, courtesy of the lovely folks from The Centre for Epilepsy and Seizure Education in B.C. with offices in Abbotsford. 

     We take no break from seizures for granted; everywhere she walks or spends time alone, every shower, bath and swim are periods of great stress followed by even greater relief. We don't live in fear but we are vigilant. Medications are taken on time, sleep is encouraged and eating regularly and well are necessary. Fortunately our daughter is good about looking after herself; no one wants her to be seizure free more than she does.

     One day perhaps she will be years and years free from seizures. Her last run was almost three and a half years! In the meantime we will keep on counting and hope to be back here, a year from now, writing about an incredible second year of freedom from seizures.  

     Please remember that if you see someone having a seizure, do stay with them and keep them safe, cushion their head, time the seizure and if it's longer than five minutes or there's two in a row call 9-1-1. Thanks!

Winter

     Having emigrated to Trois Rivieres, Quebec from England as a toddler with my family in January 1960 I have known my share of cold winters. Now that I have lived in the Lower Mainland of British Columbia for over forty years I am a fan of the west coast winter--- generally mild, more rain than snow, the occasional white Christmas. I have also lived in Louisiana and Ohio in the winter. B.C. is best for me.

     Watching the chickadees devour the black-oil sunflower seeds in one of my bird feeders on a -9 degree Celsius day (about 15 degrees Fahrenheit for those of you in Louisiana and Ohio) I wonder about a couple of things: where do all those tiny little birds, the chickadees, the sparrows, the finches and the hummingbirds, especially the hummingbirds go at night? Trying to keep my hummingbird feeder from freezing has been a seemingly futile endeavour; rotating each scarf encased bottle as often as once every hour or two is the best I can do at this point. The hummingbird feeder heaters will not be in stock today.

     Also, I wonder what were my parents thinking coming to Canada in the middle of this type of winter? It must have been similar to the situation the hummingbirds face--- unfamiliar weather of seasonal extremes to be borne as cheerfully as possible until spring arrived. Or maybe that's a bit of a stretch. Suffice it to say that as magical as a cold and frosty winter was for me as a child, as an adult I am happy to be here. Here where we use rain boots more than snow boots and umbrellas more than snow shovels. Here where a white Christmas is a wish to be fulfilled as long as it's melted and long gone by New Year's Eve.... A happy and healthy 2022 to you!