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Tuesday, December 24th, 2013
This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.
School breaks are always a bit of a challenge for our family, especially during the cold months of winter. It’s Christmas Eve and Norrin doesn’t return to school until January 6th. School breaks for kids with autism or any other special needs are tough because they are taken out of routine. And as a working mom, it leaves me scrambling for ideas. I want to keep Norrin busy but I also want him to have fun. Here’s what I have in store for the break:
Clean Out the Toy Bins. A new year is upon us and I say: out with the old and in with the new. This is a great time to clean out bins and closets and reorganize your child’s room. Get your child involved in the task if you can. Make three piles: toss, keep and donate. I love donating Norrin’s toys to his school or therapists – especially if it’s an item that really helped Norrin. It’s also a great way to teach him about sharing. And it’s fun for Norrin because he likes seeing all of his toys – I allow him to help organize his room.
Schedule a Play Date. Now that the holiday hustle and bustle is winding down, schedule a play date – even if it’s just a quick meet up at the playground or library. We don’t do play dates often, but I’m hoping to squeeze at least one in over the next two weeks.
A Special Outing. Is there a museum you’ve been wanting to visit? A movie you’ve been wanting to see? Maybe ice skating or a trip into the city? Go out and have an adventure! Take a chance and try something new with your child.
Get Crafty. I am not a crafty mom. At all. But I just discovered Kiwi Crate and ordered a craft for Norrin. I am really excited because the ‘crate’ comes with everything we need! But if you want more ideas, check out these easy crafts for kids – they’re all made using everyday items found in your home.
Cookies & Hot Chocolate. What warms up a cold winter day better than freshly baked cookies and creamy hot chocolate?! My friend Ruby has some great cookie baking ideas and an amazing peppermint hot chocolate recipe. This is on the menu for Christmas day.
Lazy Couch Potatoes. I love a lazy afternoon. I can’t wait to just snuggle on the sofa with Norrin watching movies (probably Polar Express, The Little Mermaid and Despicable Me 2), eating cookies and sipping hot chocolate.
Work on a Skill. School breaks have their pros and cons but one of the pros is not having to rush in the morning. We’ll have time to get ready at our leisure and Norrin can work on dressing himself with little to no prompts. Also, over the break, I plan on bringing Norrin into work with me at least one day. While we’re out of the apartment, we’ll work on independent public bathroom skills. I’ll make it fun by rewarding him for a job well done.
What are your plans during the holiday break?
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autism, Autism Hopes, Autism inspiration, Disability, Lisa Quinones Fontanez, Parenting, parenting advice, parenting style, Special needs, special needs parenting, special needs parenting advice | Categories:
ADHD, Autism, Cerebral Palsy, Children With Special Needs, Disability, Down Syndrome, Health, Must Read
Thursday, September 12th, 2013
This is the second guest post from Andi Sligh, who blogs at Bringing the Sunshine. She recently published There’s Sunshine Behind the Clouds: Surviving the Early Years as a Special Needs Mom, a free e-book for parents at the beginning of their special needs journey.
If it hasn’t happened already, the child of one of your friends will be diagnosed one day with Down syndrome, cerebral palsy, autism, or another permanent condition, changing your friend’s world forever. When that day comes, you’ll be afraid and nervous – your friend has crossed into strange territory. You don’t want to say or do the wrong thing. What she needs is a “foxhole friend”—someone who won’t run away in fear, but will stay by her side in the heat of the battles that lie ahead. You want to be a foxhole friend, but you don’t know how.
In the world of special needs, I’m a veteran. I have two children with disability—my daughter, Sarah Kate, was born with cerebral palsy, my son, Nathan, with Down syndrome.
Although I don’t have as much time to spend with my friends as I’d like, I treasure the friendships that I have (that’s me above with my friend Stephanie at the Walt Disney World Resort Marathon last January; I was running for Research Down Syndrome in honor of Nathan). Following are some tips on how to build a bridge to your friend’s strange new world.
Don’t use clichés, no matter how well meaning. When Nathan was born, I heard “God only gives special children to special parents” every day for weeks, and it made me uncomfortable. I knew I was no saint, but I felt pressure to act like one – to never admit disappointment or struggles or failure. That simple, well-intentioned statement was a burden that made me feel isolated and alone. God does give special children to very un-special parents, and some people do get more than they can handle. Even if clichés weren’t hurtful, everyone says them, so they get old quickly. After Nathan was born, my OB-GYN came into my room to see me. My pregnancy had been high-risk with a few hiccups along the way, and my doctor had treated me as if it were his life’s work to get my baby and me across the finish line safe and healthy. He sat down at the end of the bed and with a smile said, “Doggone it!” That simple action spoke to me in a way that none of the clichés did—he acknowledged that things hadn’t turned out like we expected, but that it was a small setback, not a tragedy.
Embrace the child from the first moment. I know it’s scary +the medical jargon makes the child seem fragile and you don’t want to mess up! But she’s still a child who feels, hurts, and needs love. See the child first, but don’t feel like you have to ignore the diagnosis. Ask questions and show interest—it’ll show the mom you’re in it for the long haul—or even better, do some research on your own so you’ll know the basics without having to ask. One of my favorite photos from Nathan’s first few days of life is of my sister holding him in her arms. She lives several hours away but had cashed in some frequent flyer miles to race down to be with us. I love that photo because there is nothing in her expression to indicate anything is amiss; she is simply a proud aunt, smiling for a photo with her new nephew.
Ask the mom how she’s feeling and what you can do to help. Sometimes the shock of the diagnosis makes it hard to manage the simplest things, like dinner. Some children are so medically fragile that their care consumes the parents’ time. Offer to babysit her other children, bring meals, do laundry or make update calls to her friends and family for her. Listen when she talks, and hold her hands when she cries. I remember every person who brought us a meal in the early days, and I have a special fondness in my heart for my husband’s coworker who brought me a laptop in the hospital so that I could write.
Don’t indicate in any way that the child is replaceable or “less than” any other child. Even if a friend is devastated, she doesn’t want to hear “you can try again” or be reminded that she already has X number of healthy children. This child is where her focus is, and she loves and values him for his own sake. Sarah Kate was born premature and when she was less than two weeks old, with no end to her NICU stay in sight, my husband and I were talking with two family members and expressing our frustration about our bad luck—we had already lost two children. One of them piped up and told us that we shouldn’t give up on having another child, and it cut us both to the core. Our tiny baby was struggling for survival, and the thought of other future children seemed disrespectful and cold.
Always take your cues from the mom. She may go through denial, anger, bargaining, and depression before she reaches acceptance. Support her grief, celebrate her child, and encourage her at each step along the way. If you can be the person who recognizes her needs and responds without hesitation, you’ll be her foxhole friend for life.
Check out Andi’s previous post: What To Expect Of Friends When You’re A Special Needs Mom
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health, Parenting, parenting advice, parenting style, Special needs | Categories:
Autism, Cerebral Palsy, Children With Special Needs, Disability, Down Syndrome, Must Read, SPD, Special Needs, To The Max
Thursday, September 5th, 2013
This guest post is from Andi Sligh, who blogs at Bringing the Sunshine. A mom to two kids with special needs, she says “We live with my adventurous husband,a wild Westie, a rescued Schnoodle and a worn-out pair of running shoes on the gulf coast of Alabama. Andi recently published There’s Sunshine Behind the Clouds: Surviving the Early Years as a Special Needs Mom, an amazingly inspiring and helpful free e-book for parents at the beginning of their special needs journey. Here, she shares her thoughts on the tricky territory of how friends react when you become a special needs parent.
Down syndrome. Cerebral palsy. Dwarfism. Autism.
Every day, children are diagnosed with these permanent conditions and others, rocking their parents’ worlds in an instant. I know what it’s like, because I’ve been there—twice. My daughter, Sarah Kate, was born with cerebral palsy and my son, Nathan, with Down syndrome. At first, I focused on the fear of the unknown: that my children wouldn’t be able to do, my shattered dreams and the impact my child’s diagnosis would have on our life and family. Later, my eyes were opened to the changes in my circle of family and friends. That woman in the photo above with Nathan, Katie, is one of my dearest friends. When he was born she helped spread the word to friends about his birth and subsequent diagnosis.
Me and the kids
Have you ever heard the phrase “foxhole friends”? Think of your friends and consider who you would want to have with you during a fierce battle—the ones who would “have your back” rather than run away in fear. Those people are foxhole friends, and having a child with a disability is one of the surest ways to learn who yours are. If you’re a special needs mom, especially if you’re new to this world, let me share with you a few things I’ve learned.
A lot of people are uncomfortable with disability. All your friends will be nice to you, but some will look through your child, rather than at him. When Sarah Kate was two, she learned to use a walker. It was slow going everywhere we went, but by using it daily, she progressed at a steady pace. One Sunday at church, another mom passed us in the hallway, smiled, and said, “She’s doing so well!” To most people, it would have seemed a harmless—nay, encouraging!—statement. But I knew it was just something she said to be nice; she hadn’t taken the time to look at Sarah Kate and notice.
Some of your friends may believe they don’t have anything in common with you anymore and drift away. Others won’t know what to say to you, so they won’t say anything at all. Others will be afraid, not of your child, but of getting too close. Your child is a reminder to them that bad things can happen to them. It will hurt. Don’t be angry, though, and don’t judge them. It’s okay to let them go if they aren’t able to be what you need them to be.
Other people will assume your child will “grow out of it,” believe the condition can be fixed, or say your child seems fine to them. Comments like these were common with both of my children: But she’s so smart and talks so well, she can’t have cerebral palsy!…. He doesn’t look like he has Down syndrome!.… It’ll feel like a big ol’ slap in the face when you hear those remarks. Don’t judge them, either, because they are doing what they think is best to buoy you. Most of them will come around over time, but it’s okay to let them go, too, if they aren’t able to accept your child’s diagnosis.
The good news: Your circle is about to change in a beautiful and powerful way. Some of your friends will do and say the right things, and you’ll become closer to them than you ever believed possible. Some casual acquaintances will be drawn to you and become new friends you never expected. They are the ones whose children will grow up with your child. Their children will appreciate disability and inclusion and that, my friend, is priceless. When my daughter was in kindergarten, I met a woman named Dawn. Her son was Sarah Kate’s peer helper at school—a relationship that had developed organically. Dawn and I were friendly, but not close, until Nathan was born. She called me while we were still in the hospital and said things to me that no one else had the courage to say. Three years later, she is one of my best friends.
Finally, you’ll meet a whole new group of friends in your child’s disability community. Veterans of the war, they understand your battles and the strategies you’ll need to employ to fight them. They will be a constant wellspring of information and support, and they won’t judge your gallows humor. You’ll make friends, too, in other disability communities, because there’s a kinship among special needs moms of all types.
Friendships are forged in the foxhole, and now that you’ve joined the ranks of special needs moms, it won’t take long to figure out exactly who has your back. It’s a gift that many people never enjoy.
Coming up next week from Andi: How To Be A Good Friend To A Special Needs Mom
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health, Parenting, parenting advice, parenting style, Special needs | Categories:
Autism, Cerebral Palsy, Children With Special Needs, Disability, Down Syndrome, Must Read, SPD, Special Needs, Special Needs Parenting, To The Max
Thursday, April 4th, 2013
The wonderful Jill Smokler, of Scary Mommy fame, has a super-funny new book out on April 9: Motherhood Comes Naturally (And Other Vicious Lies). Amongst the untruths she so bravely (and relatably!) reveals: Having kids keeps you young, the parent is in charge, going from two to three kids is a breeze, and pets make children more responsible.
Jill and her inspiration
Out of curiosity, I asked Jill to share some of her top truths about motherhood. What she had to say:
1) You will inevitably turn into your mother, at least in some way, shape or form. And usually not the way you would choose.
2) The one day you forget to check the pockets before doing laundry will be the day your child stuffs them with crayons or Play-doh.
3) Bunk beds are evil torture devices.
4) You will be forever changed: bladder, mind and soul.
5) Your young child will be happier with the box the new toy came in than the toy itself. Especially if you were really excited to see him or her opening it.
6) You will dream of the day you can drop your child—without tears—off at daycare or school, and then sob when he or she goes off without a fuss.
7) Kids pick up on much more than you expect them to, especially if you happen to quietly curse.
8) You will always regret buying toys at the Dollar Store.
9) There is no perfect mother, anywhere, ever.
Couldn’t agree more! To enter to win one of five $1000 prize packs to celebrate Jill’s book launch, click here.
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Thursday, March 28th, 2013
How can you enjoy life more and do less if you’re a parent? It seems like mission impossible. But a new book, Minimalist Parenting, written by Christine Koh of Boston Mamas and Asha Dornfest of Parenthacks, tells moms and dads exactly how to do that so your schedule, home, and brain don’t always feel like they’re bursting at the seams.
With smart, reality-checked strategies for divvying up more responsibilities with your partner, dealing with chores (who knew bill paying could be so Zen?), de-cluttering, streamlining the school year, managing meal planning and more, the book isn’t about being a crappier parent—it’s about rethinking and tweaking your parenting habits. There’s also a free online workshop—MinCamp—a series of 14 daily tasks to help you do less and get more out of life.
And how, you might wonder, does this apply to parenting a child with special needs? I wrote an essay for the book, and I’m sharing a portion of it here with the authors’ permission.
1. Let go of over-therapying your child.
Max gets a lot of therapy. So for his downtime, I don’t load it up with classes, reading time or intellectually-stimulating anything. As much as I’m tempted to, I let go—and let my son explored what he’d like. Going through a car wash twice? Sure! Sitting near an airport to watch planes take off? You betcha. I step back and let Max tells me what he wants to do and explore. It’s all good for his brain. It’s stimulating, in one way or another. (Well, we do draw the line at letting him watch “Cars 2″ five times in a row.) Max has a lot he can’t control in his life, from the stiffness in his arms to his challenges with speech; letting Max control as much of his free time as possible empowers him.
2. Let go of helping too much.
For many years, my husband and I had to spoon-feed Max. He had trouble grasping utensils and getting the food to his mouth. One day, when Max was six, I went to his school to fill out some forms. I stopped by his class at lunchtime. There sat Max at his desk, peacefully feeding himself. “He feeds himself?”! I asked his teacher, astounded. “Yes, of course!” she said. Hel-lo, codependency! Max was so used to us feeding him that he didn’t bother to try at home. When we finally started insisting he do so he resisted, but eventually he came around. It’s tempting to step in when Max’s physical challenges prevent him from doing things; I so desperately want to help. But in order for him to succeed, I have to help him less.
3. Let go of a timelines.
Back when Max was a tot, I tortured myself by reading books and newsletters about child development and milestones. Baby Max wasn’t hitting most of them, and I would despair. I finally gave the books away and unsubscribed from the newsletters. I accepted that Max was going to do things in his own time. I am grateful that they happen—not when they happen. This, I think, is good advice for any parent. Every childish unique. Every child does things when they are ready to, be it picking up a ball or potty training. Comparing your child to other kids does them (and you) no good. Let go.
Images courtesy of Christine Koh
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