Tag - special needs

1
Walk On Walk Star—Celebrating Her First Steps
2
The Lies We Tell As Special Needs Moms
3
Difficult Conversations With My Child – Part 1
4
When Christmas Isn’t Exactly Merry…
5
A Bittersweet Anniversary and Post Traumatic Stress
6
Words…
7
The Beginning—This Is Not The Life We Ordered
8
I’m Lucky To Be A Stay At Home Mom

Walk On Walk Star—Celebrating Her First Steps

  I spend a lot of energy focusing on moving forward, but when I take a moment to look back, I’m amazed at how far we’ve come. Moreover, how far SHE has come.    She wore legs braces to help align her ankles, knees and hips. She worked hard at physio every week. She practiced standing and balancing and taking a step or two holding one of our hands.    Then she took a few steps on her own. It was hard work and it took years and a lot of effort.    And then one day she just did it. Inspired to get up and chase after her new dog, she walked on her own. She fell a few times, but got up and tried again until she got just walked across the room all on her own.  I still get choked up when I watch the video of that magical moment. Walk on, walk star. We’re proud of every step you take.               Click to watch this Walk Star’s First Steps  

Read More

The Lies We Tell As Special Needs Moms

I told a lie about my child. You’re probably expecting a joke or a silly pun right about that. Not today.    I brought my daughter with me to the drugstore to buy eye drops (and shampoo and lip balm and a travel sized hairspray and milk. I need to get this impulse buying thing under control). As I stood in the skin care aisle (I also bought hand cream) Avery picked up various bottles and tubes and chattered away. Then she spontaneously hugged the guy who was stocking shelves next to us. She’s tactile and a hugger without boundaries, obviously.    All the while a young female clerk was casting glances our way. Later at the checkout that same clerk was organizing the magazines. She asked, “How old is she?” An innocent question, but one I’ve come to hate nonetheless. I understand why people ask. ALL THE TIME. They’re just trying to figure Avery out. She looks her age-ish physically, but her social graces and immature speech patterns make her appear much, much younger. “How old is she?” is an attempt to make sense of the disparity.    “How old is she?” asked the clerk. “She’s four,” I answered. […]

Read More

Difficult Conversations With My Child – Part 1

  I knew it would happen, I just didn’t expect it would be today.   Instead of chatting about his day or having a snack, my boy took his sister right upstairs after school. I could hear him asking her to repeat after him as he named objects around his room. I’ll be very surprised if this child doesn’t end up going into teaching when he grows up.   He suddenly came downstairs, looking frightened, saying he was having “bad feelings about Avery.”   “What if Avery choked?” he asked. “What would we do? I’m scared something bad is going to happen to her.”   He looked so sincerely worried it scared me.   “Why do you think she’ll choke?” I asked him, trying to determine the source of his anxiety.   He said kids at school were talking about choking and Epi-pens. They asked him if Avery had one. This is when he spoke the words I knew would eventually come. The words I wasn’t quite ready to hear.   One of his classmates asked, “What’s wrong with your sister anyway?”   This child wasn’t being cruel, he was merely curious as kids are. Though Avery’s delays aren’t visible[…]

Read More

When Christmas Isn’t Exactly Merry…

The holidays are a tiring, stressful, hectic time set smack in the midst of dreary winter. Unless you’re a child filled with wonder, Christmas can become more of a chore than a joy. But as parents we do our best to ensure our kids have a happy and memorable holiday, filled with the excitement we experienced in our own childhoods. Christmas morning at our house this year was filled with amazement and laughter. For the first time, Avery “got” Christmas. She was in awe of each present and her brother was floored by his gifts. It was, dare I say, magical. It wasn’t until Christmas night that mummy unraveled, just a little. Fa la la la la, sob, sob, sob wah. Avery did well sitting at the kids’ table at my in-laws’ and I actually got to eat my entire turkey dinner. Pretty much. Come dessert however, she was overtired, overstimulated and overwhelmed. In lieu of dessert and conversation, Avery and I went home so the rest of the family could visit. Getting her into her car seat was a struggle and a flailing arm made contact with my eye. I *may* have growled slightly. FYI: A sick and tired[…]

Read More

A Bittersweet Anniversary and Post Traumatic Stress

  This story was originally published in 2010. Avery continues to do well on her anti-seizure meds and life is good. 🙂 It was an ordinary day. If you consider 40 degrees Celsius in May normal. Avery and I dropped big brother at school and went through our day like any other. It was exactly one year since her first seizure—a severe and nearly fatal episode. I never seen a war, but yet I have Soldiers Heart nonetheless. At least that’s what they used to call it. Today we know it as Post Traumatic Stress Disorder. PTSD usually develops as a result of a “terribly frightening, highly unsafe or life-threatening experience.” It doesn’t make a difference whose life was threatened – yours or the life of someone you love. People who experience post traumatic stress tend to avoid places, people, or things that remind them of the event. But what happens when you live WITH the person who reminds you of the trauma IN the place where it happened? I tell you what happens; you avoid thinking about that event, ever. If you find yourself feeling any emotions related to said event, you crack a joke, call a friend or[…]

Read More

Words…

The letter M isn’t very commanding on its own. An E flying solo has very little influence. But when united in a word, they become powerful. I’m aware that I talk more than the average person and I don’t even say half the things I’m thinking at any given moment. I suppose this is why I enjoy blogging–it’s like a shunt, releasing the pressure of the words in my head. Words are beautiful when crafted by someone with a kind heart. Words can soothe when spoken by a gentle soul. But, words wielded by the ignorant and tactless can leave behind a painful mark. Last week my daughter happily drew lines on a chalkboard in our doctor’s waiting room. A woman sitting beside me asked how old my girl is. When I told her, she said, “Awfully small for three isn’t she?” The response in my head was, “Well you’re awfully stupid for 60!” What I actually said was, “Yup. She’s our little girl.” As my daughter drew, she and I communicated using signs. The woman leaned over and asked, “Does she talk?” I explained that she has a speech delay, but is a proficient signer. This woman then told[…]

Read More

The Beginning—This Is Not The Life We Ordered

My husband gave me a tacky beer cozy—you know those foamy cups that insulate your bottle? “This is not the life I ordered!” was written across it in neon letters. It was a silly gag gift for an occasion I can no longer recall. When our daughter was diagnosed with the genetic disorder that would change all of our lives, I dragged out the beer cozy from a box in the basement and announced that I would be using it to hold all future beverages.  The Beginning: When our daughter was four months old we had concerns. This baby, our second child, wasn’t gaining weight, she refused to nurse or drink from a bottle, and she wasn’t achieving the milestones associated with her age. By six months we were worried. By seven months we were frantic. Our family doctor (the only medical professional who actually listened to us), was at a loss. She ordered the necessary genetic testing, and in the meantime referred us to a pediatrician who I took Avery to see several times. On the last visit, near tears, I begged him to take our concerns seriously. My husband and I knew something wasn’t right. His response to my plea for[…]

Read More

I’m Lucky To Be A Stay At Home Mom

If you’d told me that one day I’d leave my job to be a stay at home mom, I never would have believed it. I went to school to be a teacher dammit. I’ve always wanted to be a teacher. As if I’d give that up… Of course I love my kids and I want to be with them. But not like, all the time. I’d always planned to parent AND work—in perfect balance. Because that’s totally doable, right? I thoroughly enjoyed mat leaves with both my babies, but knowing I’d soon be back at work made it easier to enjoy every moment. The light at the end of the tunnel shone bright. Mid-way through my mat leave with my second child, daycare was set up, schedules were organized and I was ready to go back to the classroom I loved, to a job I was really good at, blissfully unaware that things were about to change. At 8 months, our daughter became very ill and was hospitalized. Avery was diagnosed with a rare (as in one-of-a-kind-where-in-the-hell-did-this-come-from-holy-shit) genetic condition. Doctors didn’t have much information so we had no idea what to expect. The geneticist painted a grim picture, tossing out gems like,[…]

Read More

All images and text are copyright © 2019 Forever In Mom Genes