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Rituals and Special Needs Kids: Stability in a Chaotic World

mom reads book to daughter in bedOne 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

Paul NewmanSummer 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.

Active disabled five year old boy playing on the monkey bars with his fatherThe 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.

Would You “Sabotage” Your Special Needs Child For More Services?

We all know the bad news about the economy. We also know that raising a child can be expensive, and raising a special needs child can be incredibly expensive. Public schools and agencies can’t keep up with demand, so only the most extreme cases qualify for services. Usually this involves an assessment or examination. Many times I struggle with myself – I want my child to do well on these tests, but I also want her to get as much assistance and support as possible.

Other special needs moms say things like, “Well, I know he can do that task but he was tired so he wouldn’t cooperate,” and I wonder if they put their child to bed late on purpose. Or a caregiver will “forget” a medication, or let a dietary rule lapse before an appointment. And I wonder if they really forgot something they have done every day faithfully up until that point. Did they actually not know the ingredients of that food when they read all labels diligently? Or are they deliberately sabotaging their child in order to gain more assistance? And would I do the same?

It seems to be more and more cut-throat out there. Caregivers must constantly advocate for the special needs children in their lives. My fear is that anything my child is given means that another child with greater support needs might not get helped. I feel guilty about that. But on the other hand, anything my child is denied means she may never reach her true potential. She may have to learn to live with a challenge that she could have overcome if it had been addressed in therapy. Isn’t it my job to give her the best future possible?

So where do you stand? Where do you draw the line? Have you ever sabotaged your child accidentally, or on purpose? It’s okay, your secret is safe with me because I really, truly understand.

To Our Wonderful Readers…Thank You and Happy Thanksgiving!

PedSafe girls Square Button FinalThere are so many things we’re grateful for…but being part of your lives, day in and day out is one we’re especially proud of.

Our mission is simple: to do whatever we can to make this world a healthier and safer place for kids to grow up in…and as best as possible, to help keep the “ouches” – even the ones you can’t see – to a minimum. To do that we support parents, and caregivers and teachers and medical professionals and anyone else who shares that mission. If you’re here reading this – it means we’re doing something right.

Now it’s our turn to say thank you – to each and every one of you who is looking after a child – whether it’s your child or someone else’s – thank you for everything you do to keep them healthy and safe.

From all of us here at Pediatric Safety, have a wonderful Thanksgiving!

Atypical Representation: Special Needs Is Out of the Closet

Recently there has been a lot of talk about diversity – in the workplace, in politics and in entertainment. Usually people assume diversity means people of different races being represented, but it also means people of different abilities. In the past we occasionally saw a lead character in a wheelchair or with some other disability but lately some shows are not only centered around a character with special needs, the cast also includes people with special needs.

The groundbreaking show Life Goes On featured actor Chris Burke who has Down Syndrome, but has been off the air since 1993. Glee showcased a multi-ethnic, multi-sexualitied and multi-abilitied cast with not one but two supporting actors with down syndrome, although the main character in a wheelchair was a typically-abled actor. Glee ended its run in 2015. Daryl Mitchell is one of the rare actors who has become disabled but continues on with his performing career. Speechless stars actor Micah Fowler, who like his character has cerebral palsy. The show’s creator Scott Sylveri based the show on his own family as he grew up with a brother with disabilities.

The Good Doctor is centered around a surgeon with autism and savant syndrome, played by Freddie Highmore who is neurotypical. The actor does know someone with autism and also heavily researched the role. His performance consistently gets praise as the actor always conveys the inner thoughts and feelings of an often emotionless character. The show staff includes people on the spectrum and advisors so as not to be stereotypical, and the show’s executive producer David Shore points out that the surgeon is a unique character who has these conditions and is not meant to portray autism in general. The show has just started its second season in network television.

The latest addition to this brave history is the Netflix show Atypical, which has just completed its second season. Created by Robia Rashid, it follows a high school senior with high-functioning autism who struggles to be independent and move forward in life. Although a supporting character is played by an actor with autism (Anthony Jacques, who is hilarious), the first season was criticized for not including enough people on the spectrum on the staff or in the cast ( the lead actor Kier Gilchrist is neurotypical). The show does have an “autism advisor” who is a special education professional and researcher named Michelle Dean. Ironically, many of the writers and directors are female so the show was doing a lot for diversity, just maybe not the special needs kind of diversity. The second season expanded the writing staff and the actors to include more people on the spectrum, including some young people in a support group. I was amazed to actually see a casting call for high-school aged people with autism. It is progress, but these are still supporting characters. (For a negative review of the show by an actor on the spectrum, check here)

It is encouraging to me that young people growing up and dealing with challenges are being shown possibilities, just as I am sure it was encouraging for minorities to see their own races being portrayed positively. I hope that all around them; in school, at home, in the workplace and on TV and in movies young people with disabilities are being bombarded with uplifting, inspiring messages. That everywhere they look, they see potential. They will never know their full potential unless they are given opportunities and the courage and self-confidence to take them.

Last year, Micah and two other members of the Speechless cast performed at a benefit for the institute that runs my kid’s school – a school that is based on inclusion. And they were wonderful. Watching Micah it was clear – his disability didn’t rule his life – he was using it to inspire others.

To let them see…once more…anything is possible.

Should Special Kids Take Standardized Tests? Intelligent Lives

While you and your child might be excited about the new backpack, lunch box and outfits back to school also brings a lot of anxiety for students with learning challenges and special needs and their parents. Not only will they be subjected to homework and (gulp) tests, there is something else looming on the horizon – intelligence testing.

You have probably heard the quote “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” Usually that is credited to Albert Einstein, although it has never actually been proven that he said it. I hope he said it, since he didn’t speak until he was three or four years old. Ironically, being unable to speak is sometimes defined as being ‘dumb” and yet Einstein was clearly very intelligent.

Intelligence testing, standardized tests and many other official exams are often unfairly biased against people with challenges, no matter how many accommodations are provided. It is disheartening and degrading to the student and the results can be devastating to the parents. We know our children are struggling, we know where they have strengths and weaknesses but we also know they have so much potential. The data presented in cold, hard print can be crushing.

Lately I have been opting my child out of as many of these tests as possible. I don’t need to put her through the frustration of a long test, and I don’t need a paper to tell me how she measures up against the rest of the students her age. She isn’t in a competition with the rest of the students in her grade in the state – she is only in competition with herself, to do her best each day and move along at her own pace. If you want to opt out of any standardized tests, contact your child’s school.

We don’t have to be at the level of Einstein to have a happy life. A new film called INTELLIGENT LIVES looks at three young adults with intellectual disabilities as they take on high school, college, employment and relationships. The film was directed by Dan Habib. Amy Brenneman served as the executive producer. Academy Award-winning actor Chris Cooper narrates the film and also shares the story of his son. You can host a screening in your area or attend one, just check out the website https://intelligentlives.org/

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