How Special is Your “Special Needs” Child?
Last updated on November 8th, 2020 at 02:48 pm
THERAsurf takes special needs kids out onto the waves
I have been struggling with the issue of labels. I have a special needs child, but I believe all children are special – and they all, in some way, have special needs, as I discussed in an early blog post.
So, how special is “special”? Actually, my child doesn’t qualify for most programs – she isn’t “special” enough for them. But sometimes as I see her struggling with something I realize she is more “special” than I thought.
So what is the real meaning of “special”?
Clearly a child who is a musical prodigy is also worthy of being called “special.” Merriam-Webster says special is an adjective meaning distinguished by some unusual quality. So, the term “special” really means different. I have no problem with the term “different needs child” but I suspect someone somewhere would find it offensive. And again, every child has different needs so it seems redundant to me.
Most people don’t know my child’s medical history, and they really don’t need to know it. But I don’t want it to be viewed as some deep, dark secret, either. I continue to struggle with this.
How do you handle it with your child?
Rituals and Special Needs Kids: Stability in a Chaotic World
Last updated on November 8th, 2020 at 02:58 pm
One night as I flopped down next my daughter in her bed, I kissed her and said goodnight. She wished me a goodnight back. There was a moment of silence during which I mentally listed all the household chores I still had waiting for me in the other room. Her sleepy voice interrupted my list. “You didn’t say it,” she objected.
“Say what?” I was totally confused. I had just said goodnight, what more did she want from me?
“You know…” she was waiting for a response. It took me a moment, but then I realized what she meant.
“Sweet dreams,” I said softly. She mumbled her wish for sweet dreams for me against her pillow. “I love you,” I concluded. She murmured that she loved me too, and I felt her body relax. We had completed the ritual, one that I had completely failed to realize we had adopted. But to her, this little exchange of phrases each night signaled to her brain that the day was over and that she could let go of all the tensions from the day.
We hear a lot about how important rituals are for very young children and also for special needs kids, and it makes sense. In a world that may feel like it is swirling out of their control, there are a few things they can count on. When those things happen predictably it makes them feel safe and they can relax. For those of us who lack this need for rituals it might help to put yourself in this scenario:
You are driving home one day, running late and expecting the cable guy. You anticipate seeing the usual landmarks – the gas station, the bank where you almost unconsciously make your turn – but suddenly you realize that somehow you are on the wrong road! Sure, there’s a gas station but it’s not your gas station. Nothing is familiar. You are lost!
Scary, right? Now imagine that you are driving home, but this time you are on the correct road. You see that gas station and it makes you smile a bit internally. Then you see that familiar bank, and you ease into your turn. Ahhhhhh….
Certainly this is an exaggeration, but I hope it helps you to empathize with little ones and bigger ones with special needs who treasure these guideposts. I am trying to put aside my lists and my chores and see how else I can help my child feel comfortable in her world. Well, maybe after folding this last load of laundry…
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**Editor’s Note: COVID-19 is taking a toll on ALL our kids…and rituals can help. According to Bright Horizons article Talking to Children about COVID-19 (novel coronavirus) “Children need our calm, empathetic presence more than ever. Maintain your typical routines as much as possible. Rituals like bedtime stories or after dinner games or walks anchor children in normalcy”.
Summer Camps are “Serious Fun” for Special Needs Kids
Last updated on May 4th, 2020 at 11:50 am
Summer is in the distant future in my mind, but the buzz at my school’s pick-up and drop-off area has already turned to camp. Working parents (as well as stay-at-home parents) are scrambling to find programs that will keep their kids engaged and challenged and also give them great social skills and memories. Children with special needs may have serious medical conditions or need support with daily living skills, but that doesn’t mean that they have to miss out on the camp experience …thanks to Paul Newman.
Yes, the handsome man on the spaghetti sauce jar (and amazing human being and actor) started a camp in Connecticut for seriously ill kids back in 1988. He thought all kids deserved some time to have some “serious fun” and just be kids. We all know that laughter is the best medicine, and the campers have the opportunity to find new strengths and make new friends – all the while being cared for in a safe environment.
The program has seriously grown, with participating camps and programs nationwide. Now the actor’s legacy is even being shared globally – and don’t let me forget to mention that for kids who are accepted there is no charge. Yup, thanks to grants, donations and other amazing connections this is all free for the campers and their families! As you can imagine, they always need volunteers, too.
Find your closest program, camp or volunteer opportunity here.
In This Brave New World, We Are EVERY Child’s Village
Last updated on May 4th, 2020 at 12:01 pm
There are many amazing blogs by mothers of children with special needs out there in the blogosphere. Recently I read a blog post by a mother of a special needs child about the bothersome reactions strangers have to her child when out in public. I reached out to her and left a comment reminding her that up until recently special needs children were automatically institutionalized, or kept hidden away at home. Today, thanks to greater medical and psychological understanding, these children and adults are gaining acceptance and standing up for their rights. We as trailblazers must educate some of our society about this portion of our planet’s population.
My children have been involved with the CHIME Institute for many years, even though only one of them is technically considered a special needs child. CHIME believes in inclusion. While the environment is hardly perfect, at least it is a step toward improvement.
Just this morning I saw an older child laughing at the way a younger child with Downs was pronouncing something. I didn’t say anything because the younger child was too smart to give this kid the time of day, but I did catch the older one’s eye and give him a stern look. He knows I know his parents, and he shuffled away. I hope that was enough of a warning. I’ll keep my eye on him.
For a glimpse into the CHIME Institute, click here. For some great mom blog reads, click here and here. Some of the comments are great, too.
This Saturday at AMC, FROZEN II is Sensory Friendly
Last updated on November 8th, 2020 at 03:00 pm
Since 2007, AMC Entertainment (AMC) and the Autism Society have teamed up to bring families affected by autism and other special needs “Sensory Friendly Films” every month – a wonderful opportunity to enjoy fun new films in a safe and accepting environment. Saturday, Frozen II is Sensory Friendly at AMC.
The movie auditoriums will have their lights turned up and the sound turned down. Families will be able to bring in snacks to match their child’s dietary needs (i.e. gluten-free, casein-free, etc.), there are no advertisements or previews before the movie and it’s totally acceptable to get up and dance, walk, shout, talk to each other…and even sing – in other words, AMC’s “Silence is Golden®” policy will not be enforced during movie screenings unless the safety of the audience is questioned.
Does it make a difference? Absolutely! Imagine …no need to shhhhh your child. No angry stares from other movie goers. Many parents think twice before bringing a child to a movie theater. Add to that your child’s special needs and it can easily become cause for parental panic. 
But on this one day a month, for this one screening, everyone is there to relax and have a good time, everyone expects to be surrounded by kids – with and without special needs – and the movie theater policy becomes “Tolerance is Golden“.
Families affected by autism or other special needs can view a sensory friendly screening of Frozen II on Saturday, December 14th at 10am (local time). Tickets are typically $4 to $6 depending on the location. To find a theatre near you, here is a list of AMC theatres nationwide participating in this fabulous program (note: to access full list, please scroll to the bottom of the page).
Still to come in December: Star Wars: The Rise of Skywalker (Tues. 12/24 & Sat. 12/28)
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Editor’s note: Although Frozen II has been chosen by the AMC and the Autism Society as this month’s Sensory Friendly Film, we do want parents to know that it is rated PG by the Motion Picture Association of America for action/peril and some thematic elements. As always, please check the IMDB Parents Guide for a more detailed description of this film to determine if it is right for you and your family.
A Sincere Thank You To Responsible Special Needs Caregivers…
Last updated on December 10th, 2019 at 02:24 am
I was literally brought to tears by yet another story of a special needs child who was mistreated by their alleged caregivers. So, as Thanksgiving approaches, I want to express my gratitude, appreciation and admiration.
Thank you…
To every caseworker, nurse and doctor who questions parents and caregivers diligently and actually follows up…
- To every teacher’s aide who forms a bond with a special needs student…
- To every therapist who really cares about every client, whether they make progress or not…
- To every child on every playground who has included a special needs child in play…
- To every teacher who spends personal time on assessments and IEPs…
- To every agency or non-profit worker who strives to bring special needs children experiences and opportunities…
To every special needs parent or caregiver who treats that child with love, especially if they are incapable of expressing it back…
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Editor’s Note: Children with disabilities may be at higher risk for abuse or neglect than children without disabilities. According to the CDC, this is what we know, and this is what parents can do to protect them
