Not Your Average Candy-Seeker

Boy dressed as a construction barrel for Halloween

If you knew my neighbors in the white house, you could ask them about the Halloween when a kid dressed as a construction barrel waltzed through the front door, refused a handful of Tootsie Rolls, and demanded to know where the bathroom was while pulling down his pants.

If you knew the lady three houses down, you could ask her about the boy who refused all the candy she had to offer because he didn’t like her selection, but he did like her chandeliers with the energy-efficient CFL bulbs.

If you knew the family at the end of the block, you could ask them about the child who was more interested in turning on the foyer lights than getting a full size KIT KATTM or TwixTM bar.

Two years ago my son (the construction barrel) was the only kid in our subdivision who wasn’t interested in filling his orange plastic pumpkin with candy. His Halloween agenda had nothing to do with sugar and everything to do with the quirkiness that can accompany autism.

For my son, October 31 is one of the best days of the year because he thinks it’s his ticket into all the houses in the neighborhood. In his mind it makes sense that when someone opens the front door, it’s an invitation inside and he’s happy to accept it.

Opening the door to him isn’t a quick “here’s your candy,” “love your costume,” or “have fun trick-or-treating.” It’s an education on understanding those who are different.

Some of the neighbors were good sports but others were confused and didn’t know how to respond. I can’t blame them but I can educate them and anyone else who opens a door on Halloween. That advice is simply:

  • Be understanding
  • Be patient
  • Be aware

Not every child who comes knocking fits the mold of a costume-clad, candy-seeking kid who’s  spent the last 364 days salivating over this one night.

Halloween can range from confusing to uncomfortable or worse for some kids — not only those with autism but children who are shy, allergic, diabetic or any other reason that makes trick-or-treating a challenging experience.

For the children with dietary restrictions, perhaps having a few nut-free or gluten-free choices, as well as non-candy options would make all kids feel included. For a child with autism, or someone who’s simply shy, approaching a stranger’s house for candy is awkward and uncomfortable; it’s OK if a child doesn’t say “trick-or-treat” or even “thank you”.

I know many parents who practice Halloween ahead of time to make it easier when October 31 rolls around. They practice their “trick-or-treats” and “thank yous”, and get their child used to wearing a costume and accustomed to walking around the neighborhood. They may even use what’s called a social story to show appropriate social interactions as a way to prepare.

When we first started trick-or-treating, my son hated everything about the whole experience. He hated being outside in the dark. Some of the decorations were too scary. His costumes were sometimes uncomfortable and he had no interest in candy.

Someone once asked me why we bothered to take him out if he hated it so much. It was a good question but for us, staying home wasn’t an option. For my son, like many children with or without autism, the more we expose him to things the more he becomes used to them and can even enjoy or at least tolerate a previously dreaded experience.

After a few years of trick-or-treating my son now looks forward to Halloween as much as his siblings do. Most of his enthusiasm is over the prospect of getting inside the neighbors’ houses but that’s fine with me.

– Jen Lovy, Beaumont Parenting Program Volunteer

Beaumont Parenting Program Contest: Runner-Up 1

Photo of a group of kids lying down

Then …

Don’t you wish parenting came with a user’s manual? Most of us have no clue what we’re doing when we first become parents. The very best we can hope for is a good support network. With all of the life changes in this new role, sometimes all you want is a group of friends who understand and relate to you—and that’s exactly what we all got with the Beaumont Parenting Group.

What started out as a group that met on a monthly basis for expert tips has evolved into a spectacular group of friends. These are not just any friends, but rather the type that understand what you are going through. They can offer their own insights and points of view. These are the people who help to make parenting a really rewarding experience, and we are happy to be going strong for six years now.

Photo of kids standing in front of fence

And Now

We’ve seen each other through some traumatic lows such as death, loss, unemployment, and the temporary struggles that parenting can sometimes present. We’ve celebrated the highest highs like the birth of younger siblings, marriage, promotions, and so many wonderful milestones. We are truly a united front that are there to support and lift each other through the various chapters that life presents.

Not only have we become great friends as parents, but we have the unique privilege of watching our children grow up together. They have become friends in their own right and taught each other much about life at an early age.

Whenever one of us has questions about a milestone or how to handle a particular situation, we can lean on each other and are always in a judgment-free zone. There is a distinct comfort that comes from our Parenting Group, and perhaps that’s why we seek each other out and count on each other as great friends.

Men and women sitting around a table

Parents’ Night Out

We can relate to each other and cheer each other on through whatever our children may be going through. We have learned what being a good parent means, and helped to keep each other sane and calm through the various challenges, and above all we have evolved together as a group.

These are some of the dearest friends that we could hope for, both for ourselves and for our children—we are all lucky to be part of a group that has bonded us through parenthood for the rest of our lives!

– Mary Frederick

Halloween With a Tween

Photo of 3 tween girls in Halloween costumes

Cropped image. Maryland GovPics, Flickr. CC License.

Has your child asked to go trick-or-treating without you this year? You may wonder, “When is it appropriate to allow kids to go out with just their friends?” Here are a few things to take into consideration before you make the decision:

  • It is typically considered “safe” to trick-or-treat without parental supervision once your child is 12 years of age. You should still encourage older kids to go in a group, and always stick together.
  • Talk to your kids about safety prior to Halloween night. Map out a route together that the kids are familiar with. Set an agreed upon time to return home, or have them check in periodically.
  • Reinforce that they should only approach homes with the porch light on, and should remain outside unless it is a home where they have your permission to enter.
  • According to Safe Kids Worldwide, “On average, twice as many kids are killed while walking on Halloween than on any other day of the year”. Regardless of actual age, make sure your child is mature enough to cross the street safely without you.
  • If your child has a cell phone, make sure it’s on them, but that he/she isn’t using it. Headphones or earbuds playing music can be especially dangerous, as they mask the sense of hearing, which is one way to keep safe from cars.
  • Examine costumes to ensure they are fit properly to prevent trips and falls. Avoid masks that can impair vision; non-toxic make-up can be used as an alternative. Add reflective tape to dark costumes, or purchase reflective bags and glow sticks to stay visible to drivers. At least one person in the group should carry a flashlight with fresh batteries.
  • You can send a few pieces of candy from your own stash with your kids so you know what they may snack on is safe. Candy received from others should not be eaten until examined in the light.

Halloween infographic from Safe Kids Worldwide

– Erica Surman, RN, BSN, Pediatric Trauma Program Manager, Beaumont Health System

 

Spina Bifi-What?!

Boy on Radio Flyer vehicle

Who would’ve thought that a diagnosis of “permanently disabled” could look so adorable?

I lived 30+ years of my life without knowing anyone with spina bifida. How is that possible when it’s the most common permanently disabling birth defect?

The Diagnosis

An ultrasound during our third pregnancy revealed our child had Spina Bifida Myelomeningocele (“my-low-ma-ninja-seal”) and Hydrocephalus. Suddenly our world was turned upside down. We had two other beautiful, healthy young boys. How could this be?

The remainder of my pregnancy was scary—riddled with anxiety and fear and so many unknowns. On Oct. 3, 2012, we welcomed our third beautiful boy into our family, Colten.

This little man underwent more medical procedures, pokes, surgeries and tests in his first six months of life than the other four of us had probably undergone in our lifetimes, combined! It was a new world to us, and a very new normal.

Mom with newborn baby

Happy birthday, Colten!

What is Spina Bifida?

Spina bifida comes in four different forms, with myelomeningocele being the most severe.

This birth defect “happens” before some women even know they are pregnant. In the earliest stages of pregnancy, the edges of the neural plate begin to curl up toward each other to create the neural tube — a narrow sheath that closes to form the brain and spinal cord of the embryo. As the pregnancy progresses, the top of the tube becomes the brain and the rest becomes the spinal cord. This is usually completed by the 28th day of pregnancy (pregnancy tests usually detect a pregnancy around day 14). If there is an issue during this process, the fetus develops a neural tube defect, which among other things, could be spina bifida.

Other Questions

Sometimes, people hesitate to ask “taboo” questions about spina bifida. I figured I would take a few moments this October, Spina Bifida Awareness Month, to open up about some of them.

  • So it’s a disabling birth defect. How disabled?
    Because the defect can occur anywhere along the spine, the degree of disability depends first on where the lesion is. The higher up the spine, the more areas of the body are affected. The lower on the spine, the lower the impact.While many kids with spina bifida learn to walk—often with the assistance of braces, walkers, and/or forearm crutches—there are some who have absolutely no movement in their lower extremities at all, while there are some who walk with absolutely no bracing or assistance at all. Colten has a lesion of about L3/L4 (lumbar region of the spine). He has movement in his legs through his knees but no movement in his right calf/ankle or foot/toes. His left side has extremely limited and weak movement of the calf/ankle, but no movement of his toes at all. He has very weak hamstrings and glute (buttocks) muscles, and mostly uses his front hip flexors and quads to control his leg movement. As you can see, it doesn’t seem to stop him!
Little boy doing gymnastics

Colten loves doing gymnastics!

  • How long will someone with spina bifida live?
    Most people born with spina bifida today have a near-normal life expectancy. While they undergo countless surgeries and procedures throughout their lifetime, which could cause greater risk to their lives, they are expected to live full lives.
  • Doesn’t folic acid prevent spina bifida? If you take prenatal vitamins, are you guaranteed to not have a child with spina bifida?
    While folic acid doesn’t prevent spina bifida, it can decrease your chances a considerable amount. However, if you have a family history of neural tube defects, taking a higher dose of folic acid is strongly recommended and should be discussed with your doctor.
  • What about cognition?
    Most individuals with spina bifida are of average intelligence for their family, but there are a lot of things that can go into altering this though.A lot of people with spina bifida have a shunt in their brain to manage hydrocephalus (water in the brain). These shunts can fail (and they do fail!) and, if not treated in a timely manner, could cause brain damage. Repeat brain surgery with the shunt revisions could cause infections and brain damage. There are other medical implications that come with spina bifida that can cause problems. Hydrocephalus itself can lead to an increase in learning disabilities and executive function.But in general, people with spina bifida don’t have many cognition issues.
  • Is it difficult raising a child with spina bifida?
    We have three boys: 5, 3, and 2 years of age. They’re all difficult at different times for different reasons. As completely overwhelming as it can be in the beginning, or when medical complications arise, or when you’re just having one of those “I hate spina bifida days”, it’s not that much more difficult on a daily basis. Sure, I need to move my schedule around to fit in two or three therapy appointments every week plus sporadic doctor appointments.Day-to-day, our son does what most 2 year old boys like to do: play outside, make a mess while eating, play with his brothers, cuddle, read books, etc.It’s not easy raising any child. It’s certainly not easier raising a child with special needs. But once you find your “new normal”, you realize you can do it.
Little boy with his leg braces

Check out Colten’s brace progression.

– Kate Pojeta is the mother of three boys and owns her own website development/technology consulting company. She volunteers with the Parenting Program to pay forward some of the amazing kindness bestowed upon her own family by many volunteers around the time of Colten’s birth. You can learn more about the family’s adventures with spina bifida on their blog .

 

Dads Say the Darndest Things

Grandpa and boy sitting on a dock look out at the water

Cropped image. Shona1968, Flickr. CC License.

My daughter said a four-letter word.

I’m not proud of it, but it happened and I have to own up to it. These words aren’t thrown around lightly in our house, but when a 100-year storm is washing away half of your worldly possessions, you might let a few words slip out that you normally don’t use in front of the kids.

I’m not making excuses for my salty choice of words, can’t take them back now. But I can learn from it and understand that little ones are sponges and learn from their surroundings—no matter how wet.

In an odd twist of fate, we have a small social experiment going on in our house. No, it’s not who can talk more like a sailor; it’s that one of our daughters was home when our basement flooded, and the other was living it up with her aunt in Chicago. Our 3 year old flood victim was here to see us bag up some of her favorite toys and put them on a pile that stretched driveway to driveway. Her older sister saw the aftermath when she came home, but we don’t think she was able to truly grasp the magnitude of what happened.

Unfortunately, both of them have felt the stress of my wife and me trying to figure out what we’re going to do next. Where do we start? How do we pay for it? Will we get any assistance from the government? Some of those questions remain unanswered, but through the help of great friends (from our Beaumont Parenting Group) and family, we’ve been able to start the rebuilding process to get our home back to the safe place it was for our girls before the rain.

Our youngest is still a little apprehensive to even go downstairs, while our oldest still thinks some of her lost treasures are still in the garage. It will be interesting if they’ll even remember what a mess this was, or just go with the flow and be better and a little tougher for it?

Who knows, but I’m guessing that kids learn by example, so we’re trying to teach perseverance and that through trying times, family sticks together.

But maybe with fewer four-letter words.

– Jim Pesta, Parenting Program participant and father of two girls

Beaumont Parenting Program Contest: Grand Prize Winner

Mom, dad and daughter standing in park

When I found out I was pregnant, I was so excited but also very nervous. My pregnancy was full of constant anxiety and some depression, but I stupidly thought that all of that would just melt away when my daughter was born. Boy was I wrong!

I remember the first night in the hospital: Sitting on the edge of the bed looking over at my newborn daughter all bundled up and my snoring husband enjoying his slumber, I had an intense feeling of panic and doom. I would fall asleep hard, but then wake up basically mid panic attack and then be afraid to fall back asleep.

I was very blessed to have a very supportive husband and also extended family that stayed with us to help with nighttime feedings, but I started feeling guilty because I wasn’t caring for my baby all by myself. It was a terrible cycle and I was continuing to get worse. I started to hear voices and I was paranoid that I would hurt my baby or someone else. I had to spend five days in a mental health facility away from my daughter and family to get myself back. It was the hardest time ever, but I survived it!

Then I was introduced to the Beaumont Parenting Program and an angel by the name of Kelly Ryan. I remember my first postpartum adjustment support group meeting. I walked in and was greeted by her welcoming smile. I was a mess but she was so patient with me. I remember telling my story and bawling to her. Her support and her listening ear helped immensely. She then called the psychiatrist office that the program worked with and got me in for an appointment the very next day! I was also given a contact number to someone who had gone through similar issues. Kelly was doing anything and everything she could to help and continued to tell me that I would make it through this.

I am forever grateful that the Beaumont Parenting Program support group was there to help me make it through my postpartum depression/psychosis. I have since made it my duty to be there for any friend, family member or even stranger who goes through any postpartum issues. I feel that I made it through my issues to pay it forward and help anyone else I can. Together we will make it through this!

– Sarah Hutton

Getting Back to the Basics with Reading Comprehension

Dad reading a bedtime story to his daughter.

Cropped image. Gracie and Viv, Flickr. CC License.

Did you know you can truly impact your child’s literacy development with just a few questions every evening before bed? It’s true.

Reading before bed for infants, toddlers and preschoolers is beneficial in developing several pre-reading skills. Below are just a few:

  • Recognizing and supplying rhyming words
  • Understanding the features of a picture book (page reads left to right, pictures match the words, written by someone called an author, pictures by an illustrator, etc.)
  • Identifying the difference between letters, words and sentences
  • Punctuation
  • Reading intonation

Let’s keep it simple with this month’s tip. Here’s a sure-fire way you can increase your child’s reading comprehension, which they will develop before they are reading words.

  • As you read the story or afterwards, ask your child to identify the story elements: characters, problem, solution, and setting.
  • Your child will get really good at listing the above elements. Once this happens, add in more challenging story elements: the author’s message/theme, and the sequence of events. For the sequence of events, have your child retell the story across their fingers (i.e., First the boy while holding up one finger. First, next, then, last.).

– Maria Dismondy, mother of three, reading specialist, fitness instructor and bestselling children’s author living in Southeast Michigan.


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