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Maybe…

February 13, 2012 By 8 Comments

Maybe she is a terrible mother.  Maybe that woman you see in the supermarket allowing her little brat to kick and scream and throw a temper tantrum is just clueless.  Maybe that kid is spoiled rotten and just needs a little discipline.  Maybe that mother should be court-ordered to sit down and watch Dr. Phil to pick up some parenting strategies.  Maybe she is out of her mind for relenting and giving that little tyrant the lollipop he is screaming for.  And what kind of parent lets their 7 year-old suck his thumb, anyway?  Or maybe… just maybe… there is more to the story.

Maybe that mom, with her hair all mussed and her food-stained sweats, is just like you.  Maybe she had dreams and visions of her child enjoying play dates, sitting down with her “mommy friends” enjoying a cup of tea while the kids played nicely in the next room.

Maybe that mom has seen all of the Dr. Phil parenting episodes and would give her left arm to be able to reason with her child and implement those positive parenting strategies she has read in the magazines.

Maybe her child has Autism. 

The blessing and curse of ASD individuals is they physically look no different than neurotypical people.  Those of us who are around it constantly can pick up subtle signs and are able to identify it rather easily.  But to the average person, they look just like everyone else.  Unfortunately, this fact breeds misunderstanding and, too often, judgment.

Autism parents still have to get the grocery shopping done.  We still have to pick up the dry cleaning.  We still have to go to the bank.  All the while we are deeply committed to teaching our kids the life skills they need to live as close to a “normal” life as possible.  Lessons in manners can only go so far in our home.  The experts tell us that we need to teach these lessons in the real world in order for our kids to generalize what we are teaching them.  Sometimes, to be blunt, those lessons go down the crapper.  Sometimes we have to cut our losses and give in to the restaurant tantrum and let them order ice cream for dinner just to survive the meal, pretend we are a regular family, and not have to leave before the appetizer arrives.

In this, my first post, I humbly make one simple request:  Maybe, instead of judging, ask that mom if she needs a hand carrying her groceries.  Maybe just offer a simple gesture of understanding… a smile… a sign that the whole world is not against her.  Maybe say nothing and just go about your day and offer a silent prayer for God to grant her the strength and inner peace to survive hers.

-For my wife.  I love you.

Jerry is a Jersey Dad and also blogs at BaconandJuiceBoxes.blogspot.com.  You can also follow him on Twitter @JTurning   and on Facebook/pages/Bacon-and-Juice-Boxes.

This is an original post for JerseyMomsBlog.

Filed Under: Awareness, Education, Family, JerseyMomsBlog, Special Needs Tagged With: , ,

AWARENESS: Wishlist for Children’s Hospital of New Jersey!

December 16, 2011 By Leave a Comment

While we don’t normally request donations from our community, this one was special. I recall a time that my youngest son was brought to the hospital with a high fever only to have to admit him for a blood infection and antibiotics treatment. He was an infant and we had the resources to keep him comfortable during his stay, a very short one in comparison to the experiences of many little patients at Children’s Hospital of New Jersey.

Please consider making a child’s experience in the hospital a better one.  Provide a day at the movies, help throw a special party, or supply hours of distraction with arts and craft supplies.  You can also help premature and ill babies develop and heal in safety and comfort by supplying special developmental items, swings and bouncy seats.

To see the full list of requested items that you may donate easily online, visit http://www.givetochildrennj.org.

Children’s Hospital of New Jersey helps nearly 50,000 children – from birth through age 19 – every year. And now you can help them out too. Supplies and toys are constantly in need for the children we care for at Children’s Hospital ofNew Jersey.

The wish list is comprised of a lot of the items our caregivers have told us are in short supply. These items include special developmental items that help premature babies feel like they are still in their mothers’ womb, sensory equipment to treat children with learning and behavioral challenges, and playthings to distract a hospitalized child from the tedium and fear that can accompany a trip to the hospital.

You can also connect with Children’s Hospital on Facebook and Twitter to help spread the word.

Filed Under: Awareness, Feature, Special Needs Tagged With: , , , , , ,

Meds That Mother Gives You…Worth It At All?

November 10, 2011 By 11 Comments

“E, eat your applesauce!” It’s a refrain I hear myself say every morning.  Sometimes, she eats it without assistance; other times, I stir through the sauce in search of the little white beads.  On top of adding inconvenient moments to the morning shuffle, I hate putting chemicals into her body.  But I have to because it helps her concentrate and reduces her impulses to a manageable level.  Currently, she’s taking Ritalin.  Even though it helps, it still makes me cringe and feel guilty.

A few years ago, my daughter E had trouble controlling herself.  She’d grab things without thinking, grow frustrated with work or anything else new and throw a desk or another object; and, sometimes, she couldn’t sit still even if I had belted her to a chair.  It wasn’t horrendous, but it sure didn’t lead to success in school or in daily life and caused me excessive worry.

When a parent puts a child on medication, it’s never a quick fix or a subject that hasn’t been fraught with anxiety, resentment and indecision.  You keep thinking about how you failed your child and also desperately hope the medicine will bring your child back to some state of normalcy.  At first, I resisted the choice when a trusted teacher and friend suggested considering the possibility and discussing it with E’s pediatrician.  I never allowed the kids soda…why would I feed E chemicals? [Read more...]

Filed Under: "Un"Culture, Awareness, Family, M. B. Sanok, Mind-Body-Spirit, Special Needs Tagged With: , ,

Child Nurse

September 26, 2011 By Leave a Comment

My daughter was born in December 2006. In August 2007 I was officially diagnosed with Multiple Sclerosis. Since she was a baby, she has come with me to all my neurologist visits (at least every 6 months), has come to various fundraising walks/bikes with my always growing team, and knows the days when Mommy is just not 100%. I pride myself on the fact that I take good care of myself. Of course my whole family is my driving force, but the emphasis on it is my daughter. Of course there are some off-days. For instance, on days when fatigue is hitting me hard, she tells me to lay down and rest. Once a month she’ll hang out with her uncle, aunt, grandma, etc, when I go to the hospital to get my infusion. When I get home she’ll see the bandage on my arm and ask me if my boo-boo is ok. (Side note: my “boo-boo” has always been ok. Never had any side effects from the medication.) I sometimes feel bad because she doesn’t totally know what’s going on with me, but on the other hand she doesn’t know any different.

[Read more...]

Filed Under: Family, Melissa Serrano, Special Needs Tagged With: , , , ,

Potty Time!

September 22, 2011 By 1 Comment

I can’t wait to rip out the smelly, worn, family room carpet; install wood flooring; and say goodbye to the cat pee smell that emanates whenever humidity infiltrates.  Practically every liquefied substance permeated this carpet, from sweet and sticky to dirty and disgusting.  We moved in, carpet intact, never intending to change it until now.  At a child’s hands, we expected all sorts of accidents and mishaps, not including our own careless and klutzy spills.  Foot traffic and dust added to the grime as well as the fallout of toilet training.

At the suggested age of 27 months, we started potty training our daughter E.  The first time she sat on the potty, she peed in it.  A few other tries resulted in poop.  This was going to be easy!  Potential successes eluded her, however, and we were puzzled by the tiny red welts on her butt.  Unable to express her distress, my husband quickly deduced E’s discomfort, and we reached the potty seat-pinching conclusion. [Read more...]

Filed Under: "Un"Culture, Family, M. B. Sanok, Special Needs Tagged With: , , , , ,

Contributor Feature: Alicia DiFabio

September 20, 2011 By 1 Comment

JerseyMomsBlog Writer, Alicia DiFabio is many things. Wife, Mother of 4, Former Psychologist, Stay At Home Mom, Author, Blogger.

But … Autism Advocate and mother to her 16yr old daughter with a multitude of special needs including severe Autism, severe cognitive impairments, seizure disorder, hypothyroidism and scoliosis,  reaches top of her list and she wears that hat with pride and power.

We are in awe of her strength. As one of her readers’ comments succinctly states…. “If I can spend more time celebrating than sobbing, being part of the solution instead of part of the problem, loving and being loved? Then I figure that’s a pretty good life.” And that’s how Alicia lives hers. And we are inspired.

Read an excerpt of her story below to get a glimpse of her positivity and fortitude… and check her out her work at her personal blog, Welcome To My Planet.

—–The Crying Room—–

There is a place in the back of our church called The Crying Room – a tiny room in the rear of the nave, partitioned off and divided by a huge pane of glass.  It is a room where parents can bring their crying babies, loud toddlers, or any one who may not be ready or able to sit through an hour church service without being disruptive. You can see and be seen.  You can hear (through the sound miked in over the speakers) but not be heard. [Read more...]

Filed Under: Alicia DiFabio, Family, Mind-Body-Spirit, Special Needs Tagged With: , , , , ,

That’s My Sister You’re Ignoring

September 12, 2011 By 1 Comment

With all the run-up to the Sept. 11 anniversary recently, there has been much written and said about the feelings of togetherness that people experienced in the aftermath of the attack, especially here on the east coast. My friends have written on Facebook about seeing the news, then rushing to take in people who were stranded on this side of the river in Jersey. They’ve written about how other friends went into Manhattan to try and help, some simply by handing out water.

I’ve tried to talk to my young daughter about it, just a little — so she’d have some context with which to understand the constant barrage of images and news pieces that we’ve come across, even when we’re not looking for them. Like everyone else, I too remember where I was that day — a newlywed living in Philadelphia. My husband was supposed to fly that day on a business trip, on a flight that would have taken him quite close to the route of the plane that ended up crashing in Shanksville, PA.  His flight was cancelled. [Read more...]

Filed Under: Family, Mind-Body-Spirit, Special Needs, Theta Pavis Tagged With: , , , ,

The Long Goodbye

August 25, 2011 By 2 Comments

My dad did not seem to want to give me a hug. He does not remember me anymore. I could vaguely hear my mom behind me saying “Clifford, put your arms around her,” as she placed his arms around me.

I had just spent a week visiting my parents, who live in Wisconsin. My father was diagnosed with Alzheimer’s disease in 2005 (see recent post) and is considered to be in a moderate stage. He still lives at home, but requires constant supervision and help. He rarely speaks. If you ask him a question he may respond, but the response does not make sense.  One evening during our visit he spent over half an hour talking and gesturing, but we did not know what he was talking about. On those occasions, we still respond to him as if we understand. He cannot tell you if he is not feeling well, so if he has any trouble sleeping, or if my mom notices any changes in his temperament, she takes him to the doctor immediately. He spent several days in the hospital earlier this year with pneumonia, which was a terrible experience for him that I just cannot bring myself to write about.

[Read more...]

Filed Under: elizabethsboys, Family, Mind-Body-Spirit, Special Needs Tagged With:

My Rock Star: Thoughts About Autism

April 18, 2011 By Leave a Comment

At 18 months, my son spoke three words, never pointed, didn’t wave and was obsessed with music and ceiling fans. Ironically, what bothered me the most was that he never said “Mommy.”  He was my first child so I wasn’t yet an expert on the appropriate developmental stages of a toddler but I did know that kids are supposed to say Mommy. When the doctor got tired of me asking what was wrong, she recommended hearing tests and then speech tests and then eventually Early Intervention. Mommy was his 27th word.

Thus began our journey into the world of special needs. We now have 13 mental health staff that work with my son each week.  This gives new meaning to “It Takes a Village.” We lovingly call them “Team Owen.” Autism has overtaken our world – my present and his future. It finally hit me when I got a fancy invitation that said “Congratulations – your son has been invited to participate in the Special Olympics.” [Read more...]

Filed Under: Family, Guest Blogger, Mind-Body-Spirit, Special Needs Tagged With: , , , , , , , , , , , , , , , , , , , , ,

She Could Be My Kid

March 23, 2011 By Leave a Comment

Once upon a time, there was a 12-year old girl from Jersey.  She could be my daughter, she could be your daughter.  She played on her travel softball team and during the last playoff game in October, she slid into third base and landed on her left knee.  She and her parents shrugged it off, until two months later when the knee was still bothering her.  A visit to the doctor eventually lead to Memorial Sloan Kettering Cancer Center in NYC.   The diagnosis:  osteosarcoma, a cancerous tumor on the top of her left tibia.   She’s been in chemotherapy ever since.  Oh, and one thing:  she’s determined to Kick Cancer’s Butt!

This young lady’s name is Sydney Becker and in addition to dealing with the cancer and trying to keep up her normal life, she’s blogging about her challenge.   Check out her blog on Caring Bridge.   She’s incredibly candid about what she’s going through, especially since her dad told me that she’s often writing between treatments and their aftereffects.  She pulls no punches when she describes throwing up six times as a result of the medications.  And if you look at the pictures on the site, she even gets silly when she has to don different wigs as a result of losing her hair.  The whole experience of blogging seems to be cathartic to her and presents the opportunity to share her feelings and condition with family and friends in a way she could not have before the blessing of technology.   ”There are people who write back to her who post who we’ve never met and who we’ll never meet,” her dad said. [Read more...]

Filed Under: Mind-Body-Spirit, MomsCrayon, Special Needs Tagged With: , , , , , , , , , , , , ,
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