Category Archives: Special needs

Caring for two teenage boys, one with cerebral palsy and seizure disorder, one with low spectrum autism.

How Writers Dress for Success


by Lillian Csernica on August 6, 2018

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On days when I’m not going to be leaving the house, I observe the time-honored tradition of working in my Bathrobe. By the end of the day I’ve usually accumulated an interesting variety of odds and ends in the pockets.

In my right pocket, where things most often end up, I have my comb, two small butterfly paper clips, an unopened alcohol wipe, and a green plastic fly.

In my left pocket, where I carry more important items, my SFWA secret decoder ring awaits being used on relevant emails.

My nightstand is littered with the bits and pieces I pull out of my pockets before I go to bed at night. I’ve learned to make a ritual of this. There’s nothing like a few harsh metallic noises coming from the washer or dryer to cause the Spousal Unit unwelcome distress.

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There are different schools of thought on how writers should suit up for their daily work count. Some dress as if they were going to the office, because that is what they are doing. Some dress in a manner that helps them connect with the material they’re working on. I find that idea entertaining. If I were to dress in a manner suitable for the heroine of my current novel, I’d be wearing a yukata and zori. For the short story in progress, Victorian attire of the 1880s. Of the two I’d choose the yukata for summer comfort and ease of movement. I’ve worn corsets, but I confess I’m not a big fan of steel boning.

Pro tip: Nothing says we have to look like the back of the book photo all the time.

Back to the Bathrobe. Built for comfort, if not for style. When I’m writing, I want no distractions. If my shoes annoy me, I take them off. If the clip in my hair isn’t comfortable, out it goes. I’ve never carried this idea to its ultimate extreme, largely because I do most of my writing either at my favorite coffeehouse out in public, or here at home on the living room couch. Neither is an appropriate context for creating while I’m in my birthday suit.

I find that I do my best work when I’m comfortable. This means more than just wearing slippers and sitting in a comfy chair, although those can be important elements. I can’t write when I’m hungry. I really can’t concentrate when my blood sugar is low. I need a certain amount of background noise to help me focus. I don’t mind being a little cold, but I can’t stand being too hot. Total silence makes me jumpy, because the selective hearing I’ve developed over 22 years of having a medically fragile son keeps me alert for the sounds I should be hearing.

All this explains why I hang out at my local Peet’s Coffee so much. It provides everything I need to do good work.

There’s one really great aspect of the Bathrobe. Remember when we were little kids and pinned towels around our necks for capes? Or we used those old sheets to make a pillow fort? We could be anybody in those capes. The pillow fort could be a crater on Mars or the penthouse in Tahiti. That’s what the Bathrobe does for me. Because there’s no pressure, there’s no appearance to maintain, I can relax and be whoever I need to be for that day’s writing. Let the record show I own three different bathrobes.

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In her article about Authors and the Clothes They Wore by Terry Newman, Vanessa Friedman writes:

As Ms. Newman discovered, Virginia Woolf actually had a name for this awareness: “frock consciousness.” She used it to refer to the way she employed clothing to denote character, and changes in character, particularly as they applied to her book “Mrs. Dalloway.” But really, it’s a (not surprisingly) perfect turn of phrase that could apply to us all.

What do you wear when you write? Do you have a favorite set of writing clothes?

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Filed under classics, creativity, editing, Family, fantasy, Fiction, history, Humor, Lillian Csernica, marriage, research, romance, special education, Special needs, Writing

How to Get Everything Done At Once


by Lillian Csernica on July 26, 2018

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People ask me how I manage to keep writing and selling fiction given everything I have going on at home with my two special needs sons. Some days I don’t get any writing done. That’s not a happy feeling. I have to make sure I get it done. That means on some days I shove everything else to the side, grab the laptop or the notebook, and just WRITE. God help anybody who interrupts me.

What is the secret of my success?

I make To Do lists. I mean one for each separate areas of my life. Here are the categories I work with every day:

Son #1 — He’s the medically fragile one who takes more or less eleven different medications each day, along with nebulizer treatments and other health-related activities.

Son #2 — School’s out for him, so he’s in need of something fun to do each day. Given that he has ASD, he’d spend every waking moment playing with something electronic. It’s important to get him out of the house. He often rides along with me when I go to appointments or run errands.

Writing — This gets done in my favorite coffeehouse, during downtime in waiting rooms, and here at home late at night. You will learn to write when you can, wherever you can. It’s the only way to get it done.

Phone calls — Doctors, medical equipment suppliers, the pharmacy, and anybody else with whom I do not communicate by email.

Appointments — We have lots of these. I have two weekly appointments. Regular check-ups for the boys come around every six to twelve months, which doesn’t seem like a lot until they show up right in the middle of a packed week. My writer’s group meets once a month. I have conventions coming up. I must also keep in mind when my husband plans trips and when other people in the household will be away. Big impact on the caregiver schedule.

Errands — The usual. Groceries, picking up meds, whatever prep I have to do for conventions in terms of PR materials, taking Son #2 on his outings, etc.

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Once the To Do lists are made, I begin to prioritize.

What absolutely has to get done today?

Let’s take tomorrow as an example. I have to be up at 6 a.m. with Son #1 for his morning routine. The RN is coming to relieve me in time for me to rush off to my first appointment of the day. When that’s done I’ll have about thirty minutes before I need to drive to the second appointment of the day. Then I have to rush back home and fill in as caregiver until the regularly scheduled person comes on duty. That will give me five hours of time with Son #1 during which he gets two separate doses of medication and one breathing treatment.

During those five hours I might be able to write, depending on how my son is doing. He’s been having more frequent seizures this week, so my attention span has to be focused mainly on him. I might be able to get some reading in, since I can glance up as him at I turn pages, which I do at a pretty quick pace.

Once the aide comes on duty, I have more freedom, but this is the nonmedical aide so I have to draw all the doses of medication Son #1 gets between 5:30 p.m. and 10:30 p.m. I will probably sit on the couch in the living room with my laptop and catch up on email, or I’ll do the writing that still needs to be done. Lately I’m writing by hand in spiral notebooks because I seem to write more quickly and in a better creative trance.

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And, last but not least, I have to spend some quality time with my cats. Around 10 p.m. two of them get the rips and demand a game of chase-the-ribbon or catch-the-mousie. Then one of them claims my lap while the other sits on the back of the couch right behind my head.

Figure out your categories. Pick the one most important item in each. Those items go on a new list. Can you make them work out together on the same day? If not, keep going up and down the lists until you can get at least one thing on each list done in the course of one day.

It’s all progress. It all counts. The tasks do not have to be the same size or of the same importance. What matters is getting them done. If this method gets to be too much, scale back your efforts. Consider only the three most important categories. Delegate more tasks. Say no more often. Protect your time.

Most of all, make sure you WRITE. Ten minutes, thirty minutes, two hours, whatever you can manage. Just do it, and do it every single day.

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Filed under autism, cats, Conventions, doctors, editing, Family, fantasy, Fiction, frustration, Goals, Lillian Csernica, neurodiversity, parenting, publication, Special needs, therapy, Writing

Three Reasons Why June is A Great Month for Writing


by Lillian Csernica on June 8, 2018

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All good stories begin with a change in the status quo, the problem situation, that plunges the main character into turmoil. Change is the writer’s best friend, and June is a month full of changes. In many cultures, the biggest changes in a person’s life are marked by rites of passage. June is a great month for two very important rites:

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Graduation

The transition from one level of education to another is always significant. Kindergarten to elementary school, from there to middle school, and then the big move to high school as the launch pad for college. Mainstream students deserve to celebrate their achievements, those who struggle and those who shine. Today’s world places so many demands on children while at the same time burdening them with so many distractions. It’s a wonder so many students can focus long enough to do so well.

Yesterday my family attended the graduation ceremony for my older son Michael. At 22 he has now aged out of the school district’s post-graduate program for seniors in the county special education class. This means leaving the learning environment and the network of teachers, aides, therapists, bus drivers, and the registered nurse who have all been part of Michael’s life since he was 3 years old.

With the help of his classroom aide and one of his adaptive communication devices, Michael made a speech that included a little bit about himself, two of his favorite jokes, and a warm thank you to all the people who have helped him come so far. When you live in the world of special needs families, you celebrate every sign of progress no matter how small. Michael and the 6 other students also graduating today demonstrated the passion, dedication, patience, and love present in the parents, teachers, and administrators gathered there. So many stories worthy of being told.

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Weddings

June is a favorite month for weddings. Clear skies, lots of sunshine, and plenty of flowers make for ideal conditions, indoor or outdoor. Summer weather also means a wider selection of honeymoon destinations. The happy couple is about to embark on a whole new phase of their lives together.  There are all those people, the family and friends, who wish the pair getting married all the best. Then there are those people who…don’t.

I’m of an age now where I’ve been to several weddings. As a writer I know that any large event that brings together intense emotion, lots of money, family dynamics, and alcohol is going to bring out the best and the worst in people. Given that most weddings also drag God and the Law into the situation, there’s so much pressure to meet so many expectations. Put all this together and what do you get? Conflict! The key element of any strong story.

Here’s a quick list of my favorite wedding movies:

My Big Fat Greek Wedding

Muriel’s Wedding

Four Weddings and a Funeral

Shrek

Pride and Prejudice (Yes, the one with Colin Firth.)

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The Summer Solstice

Summer is the season of freedom. Long days, short nights, no school, family vacations. We can all call to mind a family vacation where at least one thing didn’t go as planned, leading to the kind of drama that makes a story worth telling.

The Solstice itself is celebrated all over the world. No matter how far we get in terms of advanced technology, everybody wants to make sure the sun keeps rising and setting. The summer solstice marks the waning of the sun. No wonder summer is full of so much partying! Midsummer Eve is known for being one of those occasions when the veil between the worlds grows thin, much like Halloween. Gateways, boundaries, borders, and other points of transition are all natural settings for big changes and great stories.

For more on the folklore attached to the summer solstice, click here.

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Filed under classics, creativity, fairy tales, Family, family tradition, Fiction, Halloween, Lillian Csernica, marriage, mother, parenting, romance, special education, Special needs, travel, Writing

#blogchallenge: Fortune Cookie #20


by Lillian Csernica on May 20, 2018

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Today’s fortune says:

A loved one is of utmost importance at this time.

SPECIAL NEEDS

I sat there on the generic brown couch, staring up at the TV screen mounted high in one corner. Hospitals. Designed to give you a crick in the neck. You were lying in bed looking up at the TV, or you were sitting in some “Family Lounge” praying the news was good or at least bearable.

It was four a.m. on a Tuesday in late April. I sat in the “Family Lounge” trying not to cry. One of the CNAs, Delia, slept on the other couch. Using her lunch break to take a nap. I didn’t want to wake her. She’d rather sleep than eat. That said a lot about how little sleep she generally got.

I knew all about sleep deprivation. Tommy was back in the hospital again. Another infection. The immune system of a premature baby isn’t very strong. Tommy had made it to age ten, but even so, none of his systems were all that strong. He held on. He kept breathing. His heart kept beating. His organs continued to develop. The doctors were amazed. If Tommy’s life had been a song, that would have been the chorus. The doctors were amazed. And so I sat there, recharging my phone, watching the minute hand of the clock move or staring at the blank black mirror of the plasma screen TV.

Tommy had to live, to go on surviving. If he didn’t, that would finish me. Losing Bobby had been hard enough. Eighteen weeks. Early rupture. He was fine. It was me, my body, that couldn’t carry him to term. I lost him. That horrible moment when I really understood the emptiness where he had been. He’d just started kicking. I was happy, really happy, for the first time in years. That lasted two days, maybe three. Then my water broke too soon, and the nightmare began.

I knew a lot about hospitals. I could write a Lonely Planet guidebook comparing the beds, the food in the cafeterias, what there was to do in the surrounding neighborhoods. I always knew where to find a bookstore, or at least a drugstore with a news stand. When Tommy had to spend a whole summer in the Pediatric Intensive Care Unit, I blew through at least a dozen books. When I finished them I’d leave some for any of the RNs who wanted them.

The clock said five a.m. Delia’s phone alarm went off. She sat up, smoothed her hair, tugged at her scrubs, then gave me that smile that was part pity and part professional compassion. She went back to work. The Infectious Disease unit. What fun. I’d want to burn my clothes and throw away my shoes every single night.

Two hours until shift change. The blood draws usually started at six a.m. so the results were ready in time for Rounds. That was a three hour window of muscle-knotting tension spent constantly on the alert for the five or ten minutes of the specialist’s time. Were the test results good? Did they show progress? Were we a day closer to discharge? The doctors were like Santa Claus. They appeared, dropped off their packets of information, then hurried on. So many more houses to visit, so many more patients to see. Instead of eight tiny reindeer, they had residents and physician’s assistants and sometimes a flock of student nurses who stood out like a flock of geese in their white scrubs. I often wondered if they made the students wear white scrubs so any mistake would leave a telltale mark. There are a lot of bodily fluids splashing around in hospitals, especially in the Infectious Disease unit.

Then came the empty hours until lunchtime. Linen changes. Emptying the catheter bag. Making sure Tommy’s pain levels were still under good control. Just awake enough to be bored, too worn out to do anything about it. I spent a lot of time reading to him, trying to find something entertaining on the hospital’s available TV channels, or just sitting there watching him sleep. It’s a terrible thing when you’re happy to see your child lying there unconscious because it’s the preferable alternative.

Stephen, my husband and Tommy’s father, spent his days at work maintaining the insurance coverage, paying the endless medical bills, keeping our life moving forward until that time when Tommy could come home again. He did his part and I did mine as I sat there alone, watching the empty black mirror of the big plasma screen.

END

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Moments from the Women’s March


by Lillian Csernica on January 23, 2018

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Joining the march. Stepping into the flow, holding my sign up high, seeing the people lining the route with their phones out, taking photos and making videos. Recording a piece of history. Thirty thousand people, according to the Santa Cruz Police Department.

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A boy not more than ten years old marching ahead of me, holding up a cardboard sign that read, “I’d rather be home building LEGOs, but I have to build #TheResistance.

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Two older women carried a banner with #MeToo on it. As we passed by, the two women offered people Sharpies so they could sign the banner. Only recently did I realize that I had faced sexual harassment several times in the workplace. I signed that banner!

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A man carried a large piece of cardboard. On it had been painted the figure of a judge, complete with white wig and holding the Scales. The empty oval where the face should be allowed anyone to stand behind the cardboard and have a photo taken, proclaiming her or him “A Future Supreme Court Justice.” How cool is that?

Chanting “Hey, hey! Oh no! Donald Trump has got to GO!”

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Our destination was the Louden Nelson Community Center. Inside on the stage stood the American Shrine. You can see from the photo that it was just breathtaking.

While I was inside the Center, I crossed paths with a woman and her son, who had Downs Syndrome. The mother asked if she could take a photo of me holding my sign. Sure thing! Then she asked if I would mind taking a photo of her and her son holding my sign. I tell you, that nearly brought me to tears.

Later, as I walked a few blocks back  to where I’d parked my car, drivers saw my sign. Horns honked and I saw some thumbs-up as people applauded equal rights for people with special needs.

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On my way home, I stopped at Peet’s for a Green Tea Mojito, one of the few guilty pleasures I can get away with on my weight loss program. I had my Women’s March T shirt on, which got me into conversations with at least three people.

My favorite barista was on duty. She wanted to see my sign, so I got it out of the trunk and brought it inside to show her. She said she didn’t know many people with special needs, so equal rights for them wasn’t something she’d thought about. She was glad to see the sign and know about the issue. Accessibility and health care are SO important these days, now more than ever.

I need more exercise. Thanks to the Women’s March 2018, I exercised my constitutional rights to freedom of speech and freedom of assembly. When it’s time for the elections this year, I will once again make my voice heard by voting.

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March Like You Mean It


by Lillian Csernica on January 16, 2018

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This coming Saturday, January 20th, all over the world women and their allies will march together to support each other and to protest all the wrong things happening in our world right now.

This is my first march, so I asked people with experience what I should keep in mind, what to wear and what to bring.

I’m here in Northern California, with its weather and its laws. Some of the suggestions given to me may not apply where you are. Still, I do want to share this information, especially with those people who are also about to experience their first march. Here is a compilation of the advice I’ve received:

Precautions:

  • Find someone willing to post bail. In my case, this would be my husband.
  • Write the phone number of said person on my arm in permanent ink, just in case my phone is confiscated or something else happens to it.
  • Stay with your group. If there are anti-protest people present, they may try to provoke confrontations. Do not let them corner you, cut you off, or get you alone.
  • Be ready to take videos.
  • Maintain situational awareness. That means know who is around you, where you’re at, and keep alert for signs of trouble.
  • Schedule check-in times.
  • Have a panic word ready so your support people know you can’t get to your car and you need to be picked up.

What to wear:

  • Most comfortable shoes
  • Layered clothing
  • A hat for shade and/or warmth
  • Sunscreen

Supplies:

  • Water
  • Snacks
  • Mini First Aid kit
  • A spare pair of glasses (if you wear them)
  • Face wipes
  • Electrolyte drink, powder, or tablets
  • Vitamin C and/or Zinc to combat potential airborne illnesses

Optional, but encouraged:

A sign. Our local law permits cardboard or posterboard weight signs mounted on a “stake” made from the cardboad tubing inside paper towels or rolls of gift wrap.

Need some inspiration? Check out these signs from last year.

 

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The One Writing Skill You Must Have


by Lillian Csernica on December 11, 2017

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Here we are in the holiday season. This time of year will stress out anybody, even those people lucky enough to have a “normal” family life. Writers often come from dysfunctional families. Writers often have mental health issues. Put it all together and the holiday season can be quite a gauntlet to run, between day jobs, holiday preparations, family gatherings, and the desperate struggle for time and space write.

My therapist taught me a skill that I will now pass along to you. This skill is designed to buy you the mental and emotional space you need to survive when you find yourself overwhelmed. Your mileage may vary, but give it a try. Three simple words:

Achieve literary distance.

How does one do this? Here’s my method. I always have my tote bag with me. At the moment it contains four notebooks, two manuscripts, one of those zippered pouches for pens, and a few other odds and ends. I take the tote bag everywhere. When life gets too intense, I pull out a notebook and a pen. If I’m stuck in a line, I spot the most interesting people and jot down quick lists of their notable physical and behavioral traits. If I’m in a waiting room, I might write a scene involving two of the people waiting there also.

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The point here is to derail our anxiety by making our trains of thought switch tracks. Becoming consciously more observant puts us into a more objective state of mind. Sometimes what we really need is to get out of our own heads. By calling on the skills that help us achieve literary distance, we can at least get out of the Anxiety Attic and go hang out in the Creativity Corner.  When we deliberately shift our focus outward, we may very well lower our anxiety levels.

I know this works for me. I get all stressed out about being on time, getting everything done according to my To Do list, or I’m all knotted up mentally because of a conflict with a family member.  When I achieve literary distance, that helps me step back, take that deep breath, connect pen to paper, and re-establish a calmer, more flexible state of mind.

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Make this skill work for you. If you like texting ideas on the Notepad function of your phone, go for it. If you need a blank journal with no lines and a few broken crayons, more power to you. If you just want to sit in a comfy spot and take some mental notes along with a few deep breaths, that’s good too.

Writing is our superpower. We can use it to rescue ourselves.

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Filed under Christmas, creativity, Depression, editing, Family, Fiction, frustration, Lillian Csernica, neurodiversity, Special needs, therapy, Writing

NaNoWriMo 2017: Fantasy for Fun & Profit


by Lillian Csernica on October 20, 2017

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That’s right. I’ve gone and done it. I have officially signed up for NaNoWriMo 2017.

I’m in the editing stage of The Flower Maiden Saga, so this year I’m going back to basics and writing a good old-fashioned sword & sorcery novel. When I first started to read fantasy, I gravitated to C.L. Moore’s Jirel of Joiry, Fritz Lieber’s Fafhrd and the Grey Mouser, and of course Conan the Barbarian. Red Nails remains one of the most chilling and thrilling stories of its kind.

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Now the tricky part will be getting my daily 1667 words written while I’m doing all of this November stuff as well:

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A road trip up to EuCon in Eugene, Oregon. John will be teaching drawing classes in the Art Bus, which is sponsored by Imagination International Incorporated, the folks who make Copic markers.

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Making Thanksgiving happen.

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Celebrating John’s birthday.

And the usual daily chaos that keeps me on my toes.

All this and write 50,000 words? 200 pages? No problem!

Stay tuned, folks. Let’s see if I can make it to the end of November before my head explodes!

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Filed under art show, artists, autism, birthday, classics, Conventions, cosplay, creativity, Family, family tradition, fantasy, Fiction, Food, historical fiction, Humor, legend, Lillian Csernica, neurodiversity, parenting, research, special education, Special needs, sword and sorcery, travel, Writing

How to Keep Halloween Safe and Happy


by Lillian Csernica on October 3, 2017

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Holidays at my house are always a bit out of the ordinary. We don’t do ordinary, or normal, or any of those just-like-everybody-else words.

My boys are too old to trick-or-treat these days, but they do love dressing up in costume, and they will never say no to treats.

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My older son does not eat by mouth. He has a g-tube which feeds a liquid diet directly into his stomach. He loves toys, games, arts and crafts, so non-food treats are fine with him.

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My younger son is allergic to peanuts. They are EVERYWHERE, especially when it comes to candy. There are a lot of safe candy options, as well as healthy alternatives and non-food items.

For the past four years I have been careful to have two bowls for trick-or-treaters. One has a mix of chocolate and non-chocolate candy. The other has a variety of non-food treats such as Halloween-themed bubbles, stickers, baby Slinkies, and glow sticks. I also keep a supply of prizes I give out to individuals and/or families who have created costumes that I think are really special.

Two years ago, I discovered the Teal Pumpkin Project.

Families like mine all over the country (and quite possibly the world) face the dilemma of wanting their children to participate in Halloween and enjoy all the fun the other kids are having. When you put a teal pumpkin on the porch, you send a very bright and welcome signal. You tell families like mine that you get it. You are aware of food allergies and related health problems and you are prepared. Come one, come all! You have goodies to suit everybody’s wants and needs.

This Halloween I look forward to putting my teal pumpkin in a prominent place on my porch so everybody will know when they yell “Trick or Treat!” at my house, they won’t go away empty-handed. On the contrary. We usually have so much that by the end of the night I encourage the older trick or treaters to take a handful.

Please support the Teal Pumpkin Project. Let’s make this a safe, happy Halloween for everyone!

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5 Things You May Not Know About Having Multiple Children with Special Needs


I have just discovered Jenn and her amazing family. As a mother with more than one child who has special needs, I know how complicated it can be to just get through the day. To me, Jenn is a superhero. Read on and you’ll see why.

Special Needs Essentials Blog

We’re happy to introduce a new gust blogger to the Special Needs Essentials community,  Jenn from Positive Parenting Specialized. We are glad to have her unique perspective on our blog!

Hi there, I’m Jenn, a single mom to a seventeen year old with Global Depression, a fifteen year old with Asperger’s Syndrome (and a hand full of co-morbid diagnosis), a 10 year old with autism, Type 1 Diabetes, and Generalized Anxiety Disorder, and a 7 year old fireball with Disruptive Behavior Disorder, Sensory Processing Disorder, Learning Challenges, and Anxiety Disorder. I am in my forties and have started blogging to try to support the kids and myself. I love being a work from home mom, praying often that it stays this way.

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Life with four children who all have unique challenges might be surprising. Maybe some of these points are “No Brainers.” See for yourself!

Here are Five Things…

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