disability Archives - Page 5 of 7 - Forever In Mom Genes

Warning: This Post May Put You To Sleep….

Apr 09 2013

Twenty-twenty-twenty four hours to go I wanna be sedated. Nothin’ to do and no where to go-o-oh I wanna be sedated… To clarify, The Ramones want to be sedated. I do not. At all. In fact, the idea of being sedated seriously freaks me out. I’m not talking about urban legend scenarios where you’re put under at the dentist and wake up with your shirt on backwards. I’m talking about the real fear of being unconscious while somebody else monitors your breathing and heart rate. That’s some kind of scary. The only thing scarier is having to sedate your child. Especially when your child has underlying medical conditions that make anesthesia more risky. In order to perform an EEG on our daughter last week she needed to be asleep. Not fully knocked out, but soundly asleep. She also needed to be sufficiently sleep deprived to elicit the disorganized brain chaos necessary to reveal any abnormal brain waves lurking about. Our neurologist suggested using Chloral Hydrate the morning of the procedure to sedate. We’ve used this drug before without any problems. However, after doing some research into Long QT Syndrome (a potentially serious heart condition our daughter is being monitored[…]

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,[…]

Oct 12 2012

My girl loves herself a backpack. Or a purse. Or better yet, someone else’s purse. So if yours is pink or has a butterfly on it, you’d best keep one hand on your handbag at all times. In typical female fashion, she stuffs her bag full of completely unnecessary items. I wrote about her handbag hoarding tendencies here along with a list of the typical contents of her bag on any given day. Our backpack pack rat often comes home with things she’s collected at school: her teacher’s sunglasses, a classmate’s pencil case, somebody else’s journal, one sock belonging to some poor sockless child, sheets and sheets and sheets of paper, a creepy doll, a glue stick…and the list goes on. To be clear, she’s not stealing. She has no concept of it. She merely likes to collect items and is happy to dole out the goods to her friends and family. She also attempts to bring things from home to “share” at school. I’ve intercepted many household items stowed away in her backpack, destined for some epic Show and Tell session. I’ve retrieved her brother’s homework, water bottle and one of his Crocs before she made it out the door.[…]

Sep 10 2012

When your child achieves a new milestone, it’s a true wonder. You think, “How are they doing this all by themselves?? Where’s my camera?!” Whether you share these pivotal moments; blog them, Instagram them, Facebook them, scrapbook them or simply hold them in your heart, they’re worth celebrating. My daughter started grade one this year. Though cognitively she is approximately age four, she’s holding her own with her peers. She relies less and less on her Educational Assistant (who we are so thankful for by the way) and she’s making decisions, following routines, and learning with increasing independence. From being warned that our child may never fully integrate into a class of her peers, to…this? I can’t express how thrilled we are. So how did she come this far? An initial diagnosis isn’t always the eventual reality. Sheer determination and moxy also factor in. Never underestimate moxy. It’s fierce. Family and friends have also been instrumental by providing us with the support and confidence we’ve needed to see us through challenging times. My father-in-law refers to us as, “Team Thornbury.” He’s right. We are a team. We just need jerseys. And finally, our community. If our child had been born[…]

Sep 06 2012

My child is different. Her genetics make it so. Due to a random stroke of fate, a chunk of her DNA is missing. Nobody knows why. But old friends don’t search for what is missing. They just see what’s right there in front of them—the joyful light surrounding this happy girl. They love her big laugh and even bigger hugs. They embrace her mischievous streak of curiosity. They accept her just as she is. But new friends, some adults and children, hesitate. “What’s wrong with her?” they ask in hushed voices…which we can totally hear by the way. There is nothing wrong with her. She may have trouble communicating succinctly. She might stumble over her words or repeat herself, but she has something to say. She wants to contribute to the conversation. She doesn’t always understand when you’re making fun of her or that you’re leaving her out, but as she gets older, she is more aware. When your child, with a disability or not, comes home from school in tears because they had nobody to play with at recess, it stings. She doesn’t need to be invited to everything. (Side Note: Number of parties she was[…]

Category - disability

Warning: This Post May Put You To Sleep….

Planning For Your Special Needs Child’s Future

The Backpack Pack Rat Strikes Again

Therapy As Play—Joyful Learning

Include Classmates Who Have Special Needs