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....