Posted by Leah Dyck | Filed under Parenting, Special Needs
tran·si·tion
19 Tuesday Sep 2017
19 Tuesday Sep 2017
Posted by Leah Dyck | Filed under Parenting, Special Needs
04 Friday Mar 2016
Posted Encouragement, Life-Long Learning, Special Needs
inTags
This is just so beautiful, I couldn’t help but share.
After reading her book Bloom, I started following Kelle Hampton’s blog. She posted this video based on an awareness campaign that she is involved with. Grab a few tissues :).
One of my favourite quotes from the video:
When Matt was born, we had no idea what to expect as he became an adult. We are amazed that he is who is is today. Having the opportunities that he’s had…. it’s just so different than what we thought it was going to be like. So much more. So, as a young mom with a new baby, just have those expectations that he’s going to have a good life. And give them all the opportunities that he can have. ~ Sheila Moore
It’s one thing to have a younger child with special needs. There are so many opportunities and supports available. It’s not perfect yet ;), but there is so much more awareness …. and compassion … I think. However, as your youngster with disabilities grows and that gap grows too, there are new challenges to face, new heartaches to contend with and new victories to celebrate.
This video touches on an American program available to adults who have special needs. However, it is important to note that such supportive services are beginning in Canada too. Close by, the Red River College Campus (Winnipeg, MB) offers educational assistance to individuals with learning disabilities. Once an individual has been accepted into a program (they do need to meet the entrance criteria for those programs), learning support, accommodation considerations and other assistance is available through their disabilities support network.
12 Friday Feb 2016
Posted Life, Special Needs
inTags
So… this is a pretty broad topic. And it applies to many people and circumstances, not just those with “special needs.” However, I think conversations and reflections like this are important because they help us to think, evaluate, encourage and engage in making the difference we would like to see.
How are we — parents, leaders, teachers, friends, professionals, workers — working towards a safe and affirming space for those with disabilities?
A quick search for the word inclusion generates a host of possible applications. For this discussion, Wikipedia’s concise description fits well:
Inclusion is a term used by people with disabilities and other disability rights advocates for the idea that all people should freely, openly and without pity accommodate any person with a disability without restrictions or limitations of any kind. Although disability rights has historically existed as a relatively cohesive movement, the movement centered on inclusion has only recently begun to take shape and to position itself in the eye of the general public.
Meaningful Connections. How are we fostering significant relationships? In our individualized and self-centric culture, how are we intentionally and thoughtfully cultivating healthy, well-rounded people? Regardless of ability or intellect, how are we providing opportunities for positive attachments within family, friendship/peer circles, education systems, and church and community programs? Are we supporting families with on going care for persons with disabilities?
As a mother of a daughter with life-long learning disabilities and some physical challenges, the most powerful encouragement has come from those who didn’t have all the right words to say, or all the right ways to “fix it,” but have simply been present. They have listened as I’ve processed all of life’s possibilities (after doctor appointments, this is particularly challenging). It has been the friend who showed up spontaneously the night before Kezia’s infant MRI to say “You can do this!” (And, somehow, she just knows, because she is walking this road too.) It was the neighbour that offered me a shoulder and a cup of coffee while I freaked out about Kezia going to school. It has been the family member that let me call incessantly when anxiety was at it’s highest. It is the person who asks, “how are things going?” and listens to the response ;). It is hearing a doctor say, “We need to talk this out because you, as the parent, need to be confident and comfortable with a treatment plan of action. Call me when you think of more questions.”
For a beautiful article on sitting with a friend going through a hard time, read “Motherhood Is The Strongest Bond.” I still can’t get through it without grabbing a kleenex.
For Kezia, it has been the chance to be included in a ball hockey game, for someone to slow down and walk with her at her own pace. It was the birthday party invite and for me, the chance to get to know parents of the girls in her class. It is knowing that those working with Kezia respect her and want what is best for her.
Meaningful Contributions. Are we providing meaningful work for those with disabilities?
That everyone may eat and drink, and find satisfaction in all their toil — this is the gift of God. Ecclesiastes 3:13.
In the days before Jonathan & I were married, I was a live-in nanny. (MAN that feels like eons ago!) Not having my own children, the whole “parenting” thing felt like a bit of a mystery. I will never, ever forget the delight in in this little fella’s face when I gave him his very own work job to do — his weekly responsibility was to vacuum the den. He couldn’t wait to show me “the surprise” when it was done. He couldn’t wait to tell his mom (her and I did end up having a helpful conversation about this too!). He was satisfied with a job well done. Even now, our own girls have daily/weekly work jobs that they do. (They are not always thrilled and willing :), mind you, but somehow it gets done.) The point is — meaningful work is rewarding. It builds skill and confidence. It helps prevent us from wasting our God-given, precious time. A job well done offers the thrill of satisfaction that few other things can. It is not about becoming successful or valuable based on what we can produce, but encouraged and empowered through the act of contributing to society and the lives in others in a positive and productive way.
That’s why I love stories like the man who opened a teaching hotel for folks that have disabilities. One Dad’s Dream
“As a disability movement, we must move forward on innovation to increase education that leads to employment options and independence—not just more services.”
Meaningful Communities. I think, at the core of it, is the human desire of belonging. You know the old Cheers song….
Sometimes you want to go
Where everybody knows your name,
And they’re always glad you came;
You want to be where you can see,
Our troubles are all the same;
You want to be where everybody knows your name.
I think most of us can relate to that feeling of not fitting in, of not knowing our place, of not feeling comfortable; unsure of whether or not our contributions are considered worthy and acceptable. For those with disabilities, this struggle can be even more pronounced. Who will sit with the child who cannot run, or work through communication issues with the one who can’t speak? How are we modelling this for our children?
This is just one opportunity for belonging: the University Participant (UP) Program at Western Carolina University. It seeks to provide a university experience, with suitable education expectations, for those who would not otherwise have the chance to engage in this growth and independence.
The students designed what became the University Participant (UP) Program, a fully inclusive 2-year program–full residence, dorms, classes, work, support, communication, goals, accountability–and soon found one student with special needs who wanted to come. “We were building the airplane as we were flying it,” Dr. Kelly Kelley remembers.
So. How are we doing? I hope that we’ve come a long way from viewing some lives as more worthy or successful or important than others. That we’ve moved away from shutting people up and away, out of sight, out of mind. That we are taking steps in the direction that makes space for everyone, not just the elite few.
But, really, how are we doing with this? How do our social networks – our schools, our churches, our families, our communities reflect this?
What could we be doing differently?
Better?
What should we continue?
Or what could we stop doing altogether?
22 Friday Jan 2016
Posted Parenting, Special Needs
inThis is my last post on holidays for a long {long} while. I promise ;).
However, this one is near and dear to my heart, and since we just moved through it, here are a few thoughts while it is still fresh…..
Several years ago, I was standing in the baby toy section at Toys R Us. And it took everything within me not to sit there and cry. In hindsight, maybe I should have just had myself a good, long bawl right there in aisle 4, while holiday strollers, sipping lattes from their Tim Hortons holiday take-out cups, eyed me with a strange sense of curiosity and pity. Giving me a little extra space as they found some toy-treasure in the next aisle.
It is funny, the things that will transport us knee-deep into grief.
I was standing in the baby section, but I wasn’t buying toys for a baby. I was trying to select something meaningful for a past-toddler-age child that was still developmentally closer to “baby-ish.” And it was making me a little crazy. I was wrestling with “Do I buy something that is developmentally challenging or something that is just plain and simple?” “What can I get her that we don’t already have?” “D*** it sucks to be buying baby things for my girl, when her younger sister has already developmentally passed her and all these toys.”
That’s when I started to look at things as age vs. stage appropriate. Kezia’s age may indicate one thing, but her stage is likely at a totally different level. This has helped me immensely to put things like toy-buying, setting expectations for work jobs around the house, or independence skills into perspective. She may appear to be eight and a half (she actually looks older, considering she is quite tall!) but what could I reasonably anticipate from someone much younger? That helps me cope with the frustration and the wrestling.
Also new to me this year (it has very likely been published before, but I can be a little slow on the up-take and haven’t noticed it…) was this catalogue from Toys R Us.
It is full of good ideas and points out areas of development that each toy targets. Even if you don’t shop at Toys R Us, it can still fuel inspiration as you search for that special something.
I would like to say I’ve set aside all pressure to pick out toys that are developmentally challenging. My natural tendency is a love for all things education-related, and so the gifts we pick for our kids tend to reflect that. (Thank goodness the girls have an awesome dad who lovingly selected remote control monster trucks for each one of his girls this year!!! He keeps things fun :P). She still hasn’t touched the alphabet magnet letter board we picked out for her :).
Honestly, the best thing we can get for her is anything she can do with her sisters. She won’t typically go play with toys. She will play with people. It’s relationships, not things, that means the most to her. A good life lesson.
15 Friday Jan 2016
Posted Life-Long Learning
inI love to read. I read fiction and non-fiction, great stories and great insights into life and learning. Some that are deeply absorbing, some that are way over my head :). However, I’ve never done a reading challenge before! So when this popped up on Pinterest, I felt the nudge to give it a try.
The biggest challenge? Probably reading something that was banned at some point. That one might take a little research!
The easiest? Hmmmm… probably the recommended read. I have a few “readers” excellent readers in my life. Thankfully, they can probably suggest something meaningful :).
Any other reading challengers out there :)? Any great book suggestions!? 🙂
To see a list of books, check out the BOOKS tab at the top of the page.
06 Wednesday Jan 2016
Tags
Wow. You take real-lived life, add “December” with all of its fun and festivity, sprinkle in a wee bit of expectation and anticipation annnnnd ……
Voila. Holiday mode.
It took a full week of hermit-mode just to recover :).
Yet, here we are. We survived. Rhythm and routine have settled in once again, and though I’m not totally accustomed to writing 2016 in my morning journal just yet, we are ready to embrace the coming year.
When I reflect on 2015, I think of “settling in.” New space, new routines, settling in to this stage of family life (which is different then The Baby Stage :)….). This was very lovely, considering it followed 2014, The Year Of Transition. In the space of a year, we moved. Jonathan’s parents moved. My parents sold their farm, retired and moved. Several of our siblings moved. There was a whole lot of moving going on, and we swapped boxes and new addresses there for a quite a while!
2015 was a season of sorting and purging, literally as we unpacked boxes and decided what to keep and what had to go, as well as mentally, emotionally and spiritually. It included a shift to having all three girls in school, which gave me the opportunity to reflect on my own identity, work and worth as a stay at home parent, and to evaluate what ways God might be inviting me to invest my time and energy. It was a time to sift through accumulated habits, and evaluate what was working and what wasn’t anymore. And to ask myself, where to go from here?
Welcome here, New Year
Well… I’m not much into resolutions. But if I were, I know what would be hovering at the top of the list….
I’m not sure where the path of 2016 will lead, what adventures it will include, or the people I will get to share it with. But I know the One who walks it with us, and somehow, that is more than enough.
25 Wednesday Nov 2015
My littlest girlie was enjoying a bit of video time as I assembled lunch, stashed dishes, and basically mumbled under my breath the list of things I wanted to tackle yet before the end of the morning day. She had found the latest Cinderella movie online (thanks, Netflix), had fast-forwarded to the swooningly romantic moment of Cinderella’s entrance into the grand ball, and was oblivious to my hustling and bustling around in the kitchen behind her.
When she joined me at the island for lunch, I could tell something was stirring in her wee little heart. It took a few simple questions and out it came….
…. in the light of Cinderella’s magical beauty (after all, she does have glitter gems in her hair and a poufy blue dress, which at age five is a PRETTY BIG DEAL…) my little gal felt ugly and less confident in her own loveliness.
Oh man. Security attack.
Of course I dove right in with, “Oh honey you are SO BEAUTIFUL!” Which, (smack to the front of ones head) is, of course, such a typical parental thing to say and something I thought I would never say, but there it was. To which she naturally responded, “Oh, you’re just saying that because you’re my mom and you just want me to feel better.” She’s FIVE and we’re totally having this scripted conversation. I felt like we were part of a tv show for a moment.
I panicked. There had to be a way to redeem this cliche parenting moment :).
I paused. How do we teach our children the truths about loving themselves ….
…. that someone else’s chance to shine does not diminish your own significance ….
…. that you can admire someone for their strengths or gifts or beauty or opportunities or whatever – and still love yourself ….
…. that we do no one any favours when we compare our short-comings to others perceived strengths (or if we are feeling particularly snarky, our strengths to someone’s perceived weakness) ….
…. that there will be times that we feel “less than” – less than beautiful, smart, talented, funny, capable – and that hopefully, we do have trusted souls to stand with us in that moment and help us see the truth of who we are.
We have THIS on our fridge …. totally covered in fingerprints (because fingerprints every where is just a very real part of life….) …. positioned at the top of the fridge (because we used to have THREE but Kezia kept throwing them on the floor and we all know that dollarama mirrors don’t last forever) …. as a reminder….
When I finally get around to hanging the mirrors in the girls bedrooms (the mirrors I’ve only had for about a year now and keep promising myself that I will get to putting them up before they head off to college), I want to write this across the top….
The most beautiful person you can be is yourself. Some days, that might mean having glitter gems in your hair. And rockin’ a big poufy blue dress (if that’s your thing….). Other days, that might not feel like enough. But that doesn’t mean it’s not true.
We did recover the parenting moment. After listening to her share her heart, I gently tapped her chest and said, “Kiddo, I do think you are beautiful. But you need to learn to remember it too. And Cinderella is very lovely in her blue dress, but just because she is pretty doesn’t mean you are not. You can both be pretty in your own way.” She was quiet. I mean, it’s hard to “feel pretty in your own way” when you are comparing your comfy house leggings, which may or may not be forming a hole in the knee, to a sparkly blue gown. But she got it.
I am sure we’ll have many opportunities to learn these lessons again and again. And again. Even as a “grown up” I still have to let this truth sink deep into my heart. Thank goodness for grace.
11 Wednesday Nov 2015
Posted Encouragement, Life, Parenting, Special Needs
inTags
“It takes a village to raise a child.” Or so the old proverb goes.
And it does. Especially if that village is a fantastic support, is as enthusiastic about learning as you are, and is really gifted at what they do.
When I attended the first IEP meeting before Kezia entered kindergarten (the first of many :)… ), I had no idea of how much she would blossom over the next few years. All I could think of was how overwhelming it felt. I envisioned her, little pigtails bouncing, riding on the “special” bus. How the school hallways, so full of life and energy and little people, would be too much for her. She seemed so small and vulnerable and I wasn’t sure I could let go.
Oh, how little I knew :). And oh how she would surprise us all!
The first day I dropped her off, she held onto her EA’s hand and off she went. Just like that. I wasn’t quite sure what to do with myself! Here I was, the hovering parent, trying to “discreetly” peek into the windows, and she didn’t even look back. She was ready for her adventure!
There were many obstacles to overcome. Going to school is tiring for any kiddo, and fatigue was a struggle. Anxiety over large spaces like the gym or loud noises (or the school STAR mascot 🙂 ). And learning how to learn when there are so many distractions, so many things to see and do.
However, we’ve been surrounded by a caring staff that has diligently worked with Kezia and with me to ensure that Kezia has the most positive and productive elementary school experience possible.
I loved this invitation sent home by her Resource Teacher last spring. A celebration of learning indeed! At this meeting we celebrated the fact that Kezia had been granted full funding for the remainder of her school career. While my mind has a hard time thinking that far ahead (Seriously, I have a hard enough time planning my week or what we’re going to have for dinner! I can assure you that 2028 is NOT even on the radar :)…), I am thankful that we don’t have to navigate any more “funding meetings.” They are not especially fun. 🙂
At our last IEP meeting in October, we laughed and swapped stories about all the fun things that Kezia is doing. She has a great team around her! As with any of us, so much of our growth cannot be measured in tests and numbers and scores, but in the stories we share and the memories we make and in the relationships we form.
One added gift this year was that Kezia and Lexi were able to ride the same bus. Now was Kezia’s turn to shine as she filled the “bigger sister” role and helped Lexi navigate this for the first time.
Learning our ABCs and 123s is quite important. The world expands incredibly as we learn to read and write and do our math facts :). But there is so much more to be discovered! Did we learn to be kind? Did we delight that sense of achievement from overcoming our fears? Did we take the time to be compassionate? Did we realize that there is more to life, more to each one of us, than the collection of our achievements and merits?
I love this learning journey. I don’t love every single thing about it :), but I do love it. I appreciate the people who have cared for us, the steady teachers all around us. I recognize that working towards an inclusive education is a process, and that many many people have persevered, and continue to do so, in order to extend a suitable education for anyone. We been blessed by the fruits of their labor, and hope that we too can leave a positive, inclusive legacy.
Source: Daily Quote
What are you learning today :)?
14 Wednesday Oct 2015
Did you know that your body is an absolute miracle? The way any single one of us can function at all, regardless of how well our body seems to be doing, is nothing short of awe-inspiring. The fact that we can move and breathe and adapt and work and play is simply …. amazing.
For the past two years, we’ve been working through a diagnosis of epilepsy (absence seizures). We’ve tried various interventions, each with different levels and seasons of success. I don’t think one has been necessarily “more successful” than the rest; it seems rather like the strategies have worked together for better health.
Recently we added dietary considerations to our game plan. I am not cool enough to be trendy :), and am even more leery of dietary trends, but after speaking with a person at the Manitoba Epilepsy Foundation, I was starting to suspect that there is a least some dietary component to managing this condition.
When I started researching this, I discovered three main dietary paths that people can take, depending on their circumstance and particular goals.
What I did not want was for food to become an enemy; to create an atmosphere in our home where we’re afraid of what we’re putting into our mouths or focusing a lot on fat and sugar and calories and carbs. When our girls started reading labels (and at the beginning you do have to read a LOT of labels!!), I tried to encourage them to look at the overall picture of food – to explore what kinds of effects food has on our bodies and to make choices accordingly.
For many who have allergies or dietary considerations, this challenge is a part of daily life. Reading labels, checking nutritional content, perhaps shopping differently – it is a lot of work at the beginning. Trying to encourage someone to eat different than they would like to, particularly a child, is also a lot of work :).
But is the work worth it? Has the diet been successful?
Drum roll please :)……
Yes…. and not totally. Yes, in the sense that as we’ve paid attention to maintaining as level a blood sugar as possible, I’ve seen a remarkable stability in seizure activity. In our case, these absence seizures are very, very short, but can become quite frequent. As we implemented the LGI Treatment, I saw a big improvement. It was very encouraging :). As we’ve worked towards a lower daily carb count (Modified Atkins Diet), I have not seen as much of a change. The hope was that the LGI Treatment would bring stability, and the MAD would stop them completely. So far, unless there is a dramatic change, the MAD diet will not control the condition entirely.
I should add that we have started this food plan under the guidance of a nutritional specialist who worked for many years at the Children’s Hospital in pediatric dietary care. She is very knowledgeable, and also knows how far to go on the diet (limiting carb intake) before contacting a pediatrician to follow blood and urine tests. These appointments can get pricey, and thankfully we have an insurance plan that does cover the majority of the cost.
It is also important to note that in order to evaluate the success of any strategy, proper tracking is essential. I’ve set up a system that seems to work well for us to follow how many, and what times of day (thinking of chunks of time, ie. breakfast, morning, early afternoon, late afternoon, etc) seizures are taking place. This helps to examine possible triggers. It also helps us to determine whether there is any progress over time (ie. does the strategy help us during the cold season, when seizures tend to be more frequent)? I’ve also set up a simple excel document that helps me to see Kezia’s carb count for the day – and what needs to be changed or added.
There are a lot of adaptations. I did a lot of our cooking, and even more so now. If at all possible, I try to make her modified “treats” look exactly like ours. I’ve tried baking with stevia, with limited success, and have starting using xyletol as a sweetener – it is worth the {much extra} cost :). If you need to determine the carb count in a recipe, I’ve found this calculator to be very helpful. And with a free account, you can store modified recipes so that the nutritional content is always easily accessible. This program also has an extensive database of store-bought items — like things that are great to have along in the back pack. So many times the kids will be offered a treat – and now I have suitable options for Kezia as well so that she will not feel left out. Check out the weight loss or diabetes sections of your grocery store for some good options.
Be aware that “sugar-free” does not mean that you bake with honey instead!! Many, many pinterest recipes that claim to be “sugar-free” or “low in carbs” are really not. Reducing sugar intake is never a bad idea in any case, but if you are really watching your carbs, many recipes still include them in various ways.
If you are considering using these diets as a way of managing epilepsy, here are a few helpful resources:
Of course, there are differing degrees of wellness; different levels of functionality that we are content with or struggle with. Sometimes, the simplest strategies help ease the issue, other times relief is more complex. In some cases, we may not achieve the well-being that we would prefer. Some of the dietary tactics, combined with what we were already doing, have worked quite well. And we’ve learned a lot about the health and well-being of our bodies in the process!
16 Wednesday Sep 2015
As the dust from summer adventures settle, and the rhythm of fall life begins, I feel like I am trying to catch my breath just a little! I tidy corners that need attention, I sift through pictures, and swap out the kids clothes that seem to have outgrown overnight :).
Summer’s flexibility is grand. I am not sure who is more excited on that last day of school — the kids or me! I snuggled in beside Mikayla that evening to do our bible reading/prayer time/book reading routine and we talked about the possibilities that lay ahead. The kids spend a lot of time running in and outside, playing with each other and playing with the neighbors and there is just a bit of a laxa-daisy flow.
It is also a time of “intentional parenting.” More time together also includes more time for squabbling :). (That first week of transition is a bit of a bear! Phew!) Consequently, I had pinned THIS to our fridge. I have sensed a growing need for us to think through our apologies and to learn to take responsibility for our actions that affect others. I got it off a website (if I can find the link I will post it!). And so, for that first while, whenever we had to work this through (and we all got a lot of practice!!!) we would go to the fridge, work through the steps of reconciliation and think things through just a little bit.
Summers with special needs can also be tricky. Kezia is very sensitive to heat and humidity, of which there is quite a bit during the summer months. I found myself struggling with worry each time she went outside to play. Do you keep kids indoors all summer, protected but quarantined? Or let them play, knowing that the heat will have an exhausting effect, but at least they got fresh air and time with friends?
Also, along with most people who have learning disabilities, we rely heavily on routine as a teaching tool. Self care and independence, dietary habits, and development goals we’ve set during the school year can seem to backslide and that can be very discouraging. This year I was more emotionally prepared for some of those gains and what felt like losses, but it still can feel challenging and overwhelming.
And, as we come and go, there are always considerations for Kezia. Is this an activity that will work for her? How can we accommodate her different needs? How can I make sure she has the right foods to eat at the right times?
This year we were blessed to receive an EZ Rider stroller for her through a special needs lending resource. These strollers are heavy duty and are quite costly if you have to purchase one. It was such a gift. We had tried out each stroller we presently have and it was very obvious that Kezia was in need of a new set of wheels :). She felt like she was in a parade as she glided up and down the streets of Gettysburg, Pennsylvania :). She loved it, and it was a good option for us for those days when we needed to do a lot of walking.
Perhaps you are in a situation where special needs carries with it a lot of additional considerations. Medication. Health concerns. Appointments that can quickly fill up the calendar. Adjusted or cancelled plans because things that day are just not working. A back pack full of personal supplies. It becomes “normal,” but “normal” doesn’t mean that it’s not overwhelming or exhausting. I’d love to hear how you find balance in that.
As fall settles in, and we all find our places again, we are a few months older, more practiced at sincere apologies and we’ve collected memories like treasured seashells. And we welcome the rhythm that autumn brings.