special needs Archives - Page 13 of 16

I Don’t Care If You Stare

Mar 27 2013

Pretending to be a puppy at the pet food store… The moment I stopped caring so much about how strangers perceive my child, is the moment I was set free. I can’t pinpoint when it happened exactly, but somewhere along the road from resentment to contentment, I rediscovered the joy of parenting my unique child. I don’t mind a curious glance my way if it’s brought on by my own behaviour. If I pull out some experimental moves on the dance floor and turn over on my ankle and squeal like a pig, (hypothetically of course) an eye-roll in my direction is justified. When strangers stare disapprovingly at my innocent child however, my mama lion mane stands on end. Though my daughter appears “normal,” her developmental delays cause some decidedly odd behaviours. Errands are always eventful. Common grocery store scenario: As she furiously stuffs checkout aisle candy into her pocket, her attention suddenly turns to the man behind us in line. While tugging relentlessly on his sleeve, she announces to all within earshot that he’s her daddy (I never met the guy, I swear!). When she tires of him, she darts behind the counter to give[…]

Mar 24 2013

With so much medical and genetics related information accessible online, many parents regularly turn to the internet to research everything. If you’re the parent of a child with special needs or specific medical issues, it’s crucial to understand as much as possible about current challenges, potential problems, and helpful therapies. This knowledge is both a blessing and a curse. Our daughter has a chromosomal deletion/duplication disorder. This damaged DNA makes her susceptible to certain diseases. Incredibly, scientists have identified a number of specific faulty genes as the cause of certain diseases. We have a comprehensive list of which of our daughter’s genes are affected and after delving into the online world of genetic gene cards, we’re aware of which diseases may be looming. I don’t have to tell you how frightening this is. It’s like knowing your child will likely be in a horrible car accident in the future, without knowing when or where or how severe, yet you’re powerless to stop it. There’s nothing you can do, but being armed with information and a solid understanding of your child’s diagnosis or prognosis is essential in terms of being able to ask the right questions. Most doctors do not appreciate Dr.[…]

Feb 10 2013

I’m a compulsive planner which means I need like to know what’s going to happen next; and if I can control what that is, even better. FYI — I know what we’re having for dinner every night for the next two months. When it comes to my children, I have to remind myself to stop obsessively looking forward. However, there are some things that really must be arranged in advance when you have a child with a disability. Though I hope to be around for a long time to care for my family, even I, the master of control, can’t control that. So as unpleasant as it seems, we recently updated our wills and named our children’s guardians and Powers of Attorney. We also created a document listing all accounts, assets, debts, passwords, and any other crucial information family members would need in the case of, you know, our demise. We set up an RESP for our son. He’ll need it to help with law and medical school. After that, he’s on his own. I’m sure his astronaut salary and Pulitzer prize money will be enough to get by on. (What? I tend to dream big.) So with those details in place, I can relax and just enjoy my kids,[…]

Feb 04 2013

When you wish upon a star, sometimes your wish really does come true and you end up sitting beside a princess in the Orlando airport. When we arrived in Florida and boarded the Magical Express to our hotel, it started–the happy tears. Each seat on the bus had its own T.V. playing images of Disney. I challenge even the coldest heart not to melt during a “Let the memories begin” video. Seriously. So while her sappy mum indulged in a misty moment, a little girl looked out the window pointing and laughing, bouncing up and down unable to contain her excitement. “I so happy!” she shouted. The lady in front of me turned and smiled warmly saying, “How sweet. She’s so excited.” Then my daughter added, “I on a bus!!!” Sigh. Perhaps we could have just stayed home and ridden around town on the city bus a few times? But then we would have missed the magical moments that followed over the next few days. Avery soon realized that though the bus ride was fun, riding the Tower of Terror, going on safari, and meeting Mickey Mouse IRL were more fun than any bus. Even a double decker. My husband[…]

Jan 29 2013

“What grade is your daughter in?“ A simple question with a slightly complicated answer. Avery is six and technically in grade one. However, we have been blessed to work with such dedicated educators who have come up with a brilliant scenario. Avery is registered for grade one with a goal for her to complete full-days in the grade one classroom by the end of the school year. For now, there are times throughout the day that even with modifications to the curriculum, Avery is left behind. This is where the creative planning and organization comes in. The team has put together a schedule that allows Avery to spend part of the day with her age appropriate peers, participating in circle time, group work, as well as independent tasks assisted by her amazing E.A.s. Then she is taken to her kindergarten room where she can join in on language and math lessons and more hands-on activities to help further develop her phonics, numeracy and fine motor skills. As a teacher, I know how much effort this detailed schedule took to put together. But the team did it without complaint and with my child’s best interests in mind.[…]

Tag - special needs

I Don’t Care If You Stare

Online Medical Research: A Blessing And A Curse

Planning For Your Special Needs Child’s Future

Making Disney With Your Child With Special Needs Even More Special

Manners and Milestones