Dec
11

Sophia Turns 9 – Oh The Milestones We Have To Celebrate!

Today Sophia celebrated her ninth birthday. We are in Xenia, Ohio this week getting her new service dog. She has made so much progress over the years but the journey has been nothing short of amazing.

At 2 years old, we noticed that something was wrong (see memoir entry 1). She was barely eating solid food yet, did not speak more than a few words, did not sleep more than three hours at a time, screamed in fear at almost everything and cried at any noise, wind or smell. With a diagnosis of severe sensory integration disorder, we began an intervention that required five to six hours a day of therapy. Every minute mattered as she approached her third birthday.

At three years old, Sophia was only 17 months developmentally, more than half her age delayed emotionally and cognitively. She was diagnosed with Pervasive Developmental Disorder Not Otherwise Specified PDD-NOS. This is a fancy term under the umbrella of Autism at the time. She had abnormal EEGs with absence seizures and migraines. Her anxiety was so severe that we could rarely take her in public, especially with moving swings in the park, grocery carts or ceiling fans. With the introduction to a new doctor we found several medications that calmed her down and made things so much more manageable and life a little less frightening to her. Read the rest of this entry »

Feb
19

Emergencies – Is Your Child Predictably Unpredictable?

Every day non-threatening environments such as a grocery store or mall, can be highly stressful and disruptive to a child with sensory issues. But for most of these places, we know the environment, we know the coping mechanisms we will use to help our child navigate and if a melt down occurs, we know how to keep our little one safe and make an exit to a more calming environment.

My daughter Sophia has always been a runner. Even in the grocery store at a very young age, the slightest sensory intake could make her bolt on me. In one situation, I had to make a quick decision to leave my three year old in the cart alone, to chase after Sophia to keep her from running out the automatic doors and into traffic in the parking lot. I said a quick prayer and hoped that a guardian angel would keep an eye on her while I ran after Sophia. After that incident I rarely took both of the girls together anywhere for safety reasons. As my son got older, he became a really great help in these situations.

No one likes to play the ‘what if’ game, but what happens if you are suddenly unable to tend to your child? If you were in a car accident and unable to move or unconscious, what are the chances that your sensory child would bolt from the car into traffic or wander into a neighborhood? Would medical responders or good Samaritans know your child was even in the car with you? If you couldn’t communicate, how would you describe what your child looks like? Would they know your child has sensory issues and how to help them stay calm? And if they had to transport your child to the hospital, what difference would it make if a nurse had advance knowledge that your child had sensory issues or special needs to properly care for them?

Below are a few small preparation steps that could save your child’s life: Read the rest of this entry »

Feb
19

Memoir Entry #1: Early Signs of “Not Normal”

Sophia was my third child. I was an experienced mother. I knew what normal was and I knew a red flag when I saw it. Total meltdowns in public places, always wanting her clothes off, hiding under my end tables, crying because the wind hurt her face, screaming in terror at moving things like grocery carts and wagons, not sleeping more than three hours at a time and a bedtime routine with more steps than a country line dance that had to be done in exact order, were all red flags of “not normal”.

My mind became obsessed with what was causing this behavior. Poison in our well water, a food allergy, a tumor in her brain, a demon in her bedroom, toxic exposure to the paint primer I used to paint her nursery, a baby switched at birth, mercury poisoning from my new found love of tuna and salmon during her pregnancy, or a mental illness passed down from some unknown relative locked away that my family never told me about. Regardless of what “it” was that made her this way, my baby girl was different than normal and I would need to find a way to deal with it. Read the rest of this entry »

Feb
19

Memoir Entry #2 – Reconstructing Memories of My Other Children

My son, in third grade at the time, was attending a small private school that rented space at a church. He had a music concert and I had no sitter for Sophia. There were only 25 students in the entire elementary. This presented an interesting challenge because the small crowd would be an advantage to Sophia but the down side was that Sophia’s every move and sound would be show-stopping obvious to all.  As I often did, I set my hopes high and came home disappointed.

On the drive there, she became agitated in the car. Her older sister, Cecelia, merely glanced at Sophia and she started screaming. Her older brother was bouncing his leg ever so slightly and she was insisting he stop. It was going to take more than sitting in the back row and offering bubble gum to get through this night.

I started getting mad. This was not fair to my son. He worked hard and deserved our full attention at this event. We approached the intersection near the school and I saw a 7-11 quick stop. I told my husband to pull in. “I’ll be back in a minute,” I said.

Quickly browsing the aisles I filled my hands with anything I thought would capture her perseverative attention. Two boxes of band-aids to peel open, two bags of m&m’s to sort colors and eat, one box of crayons to peel the labels off, and a package of post-it notes to peel and stick. There. Hell or high water I was going to keep her occupied so I could enjoy this evening and watch my son.

Feeling a bit like Macgyver, I approached the Read the rest of this entry »

Feb
19

Memoir Entry #3 – Obsessed with Observing

Living with Sophia’s neurotic obsessions each day eventually rubbed off on me. After a few poor attempts at filling out questionnaires for doctors and therapists, I realized I didn’t have solid answers to even half of their questions.  How many meltdowns does she have in a day? What are her eating habits exactly? How many words can she say? How many hours does she sleep at night?

I felt an immense amount of pressure to answer those questions as accurate as possible. Her diagnosis, future therapies and interventions would all be driven from these questions and any observations that supported them. I freaked.

I had been reading a book about Maria Montessori because my son was attending a Montessori pre-school.  Her philosophy of the teachers role was three-fold: as the main caretaker and guardian of their environment; as a facilitator of the child’s interaction with the world and independent activities; and as an observer of the child’s behavior, deficits and strengths as well as their progress.

That hit me like a ton of bricks. I needed to adapt her home environment, observe her constantly and facilitate any interaction she had with the world around her. I didn’t feel like I could adapt anything in her environment until I observed what was truly upsetting her and comforting her. So, like any project I would have managed in corporate America, I started with a spreadsheet and taped it to my refrigerator.

I tracked her meltdowns, I wrote down every word she said, I charted her sleep pattern for weeks at a time. A notepad was on my bedside table to write down every time she woke up, how she acted and when she went back to sleep. I charted it to look for patterns. Then I took it to a new level, I corresponded her eating diary with her sleep patterns. Read the rest of this entry »

Dec
17

Sensory Fashion. Big Headphones are Cool!

When I was in high school I can remember seeing “special” kids in our assemblies with big brown headphones on that looked as if they came from the reading room. I didn’t understand what they were for until I had my own little sensory cutie. Headphones can be a huge help in reducing noise and sensory triggers. Even a few years ago, the headphones available were either super tiny or big, ugly and awkward. If I was going to put my daughter in a pair of those, I might as well of ordered a t-shirt to go with it that said “I have a problem!”  But with a twist of fashion fate, we are now in an era where headphones are cool. Especially the big ones!

Today’s headphone fashion has given our little sensory cuties a whole new collection of headphones with hundreds of colors to choose from, great noise reduction controls and adjustable size. Even if my little one doesn’t have her headphones plugged into something, she doesn’t stand out. In fact she looks cool and that is a fashion gift!

This new craze gives hope to getting through a few more of my older son’s basketball games, an extra ten minutes in the grocery store and less fighting in the back seat of the car. I also use them in the house. Noise from my son playing basketball in the driveway, a neighbor mowing the lawn or extra visitors in the house are all sensory triggers that can be bothersome to kids with sensory issues. Plugging the headphones into an itouch or tv can be a huge stress reliever for my daughter and me!

This is definitely a Top 10 Sensory Hippo must have and it’s also a great gift if you are looking for something for a child with sensory issues. Just make sure to pay a little extra for the ones with noise reduction controls. Very worth it!

 

 

 

Nov
27

Gifts for Children with Autism

I was asked by a reader to give some ideas to those wanting to buy a gift for a child with Autism or Sensory Integration Disorder. This topic is very dear to me because as a parent of an Autistic child, I could pack a closet with gifts given to her that she really couldn’t enjoy. I clearly understand that most people find themselves in an unusual predicament: they don’t really know what to buy the child, but would be too embarrassed to ask what they need or feel odd giving money or a gift card.  My suggestion is to give a gift card to the parent and a small gift to the child. This is a win-win. Gift cards like American Express allows the parent to buy specialty items that you may not even be aware they need and are not found in traditional department stores.

Now, for the child…think small – big is not always better. I don’t mean the actual size of the gift but the gift itself. If I took a bag of shinny new coins from the bank and wrapped them up with a coin sorter, my daughter would entertain herself for hours. It would cost me less than three new Barbie dolls that she would never play with. Same is true for a small hand held toy that lights up versus a bike.  If you are trying to connect with your little Autistic friend on an emotional level to bond or build a relationship, try making a book or game that is personal.   Here are my suggestions for gifts: Read the rest of this entry »

Mar
04

Imaginative play can offer sweet rewards!

For years, while raising my Autistic daughter Sophia, the occupational therapists would harp on me to interrupt her any time she resorted to lining things up or got too obsessive about stacking and sorting. There is one part of me that agrees I need to stretch her to move outside of her instincts and learn to “use her imagination” more. But on the other hand, what if her imagination just led her down a path that was different from my imagination and most other children? What if there was something special that she saw in a set of objects that I didn’t see? Testing this thought one day, I sat her down at the dining room table and poured out a bag of M&Ms in front of her. I said nothing to her and pretended not to pay attention to her. I sat for several minutes watching her sort the M&Ms first into groups of like colors. Then, she began creating two rows of different patterns. Those that remained that did not complete the pattern where popped in her mouth. She paused for a moment staring at the M&Ms as if there was some self gratification (without any facial expression) as if it were a work of art to be studied further. She then began kicking her chair and eating one M&M at a time.

My theory proved true. Sophia’s idea of creative play and imagination is just as beautiful as the way my son used to find creative ways to fling M&Ms from one room of the house to another. It is not what some would call normal imaginative play but after enjoying her special and delicate display of these M&M’s I wondered what else she could design. So my advice is to continue “stretching” your Autistic child’s imagination but don’t surpress the beautiful imagination that is trying to find a way to express itself. You may be emotionally surprized and amazed!

Feb
06

Activity: Clothesline

This is another example of how I found things around my own home to practice the skills my Autistic daughter needed and incorporated them into her daily routine. This was my way of a home-based early intervention for Autism.

One of the many tasks at hand was to work on strengthening the muscles in her hands to someday improve her pencil grip. I found that pinching clothespins were just challenging enough. To make it fun I found different places to hang the clothesline and different items to hang.

In my laundry room, I made a line just her size and had a special laundry basket with wash cloths for her to hang. Buying a variety of new colored cloths allowed me to quiz her on colors by saying “hang the green” and then watching her find the green cloths in the basket and hang them. If I said “rainbow” it meant to hang one of each!

For a table top activity, I found a small tray with handles and tied a shoelace across the holes in the handles. I then placed a folded wash cloth over the rope. In a small bowl I put a handful of clothes pins. I showed her how to take each pin and place it on the cloth on the line. Positioning the towel and the pin at the same time was too big of a task to start, so this allowed her to focus on pinching the pin. As she got older, I used the same task but placed letters and numbers on the pins. I could spell words and ask her to put them in order. I could also put pins 1-5 out and ask her to put them in order. And once she achieved that, we worked on putting the pins 1-5 in order from “smallest to biggest” and “biggest to smallest.” This one took her a while but she did eventually get it.

If hanging a line in your home, always remove the rope when you are not in sight so the child does not have any accidents with it. Other places that you might consider are long hallways or in the kitchen between two cupboards. This of course can be a fun outdoor activity as well, just make sure the line is always adjusted to the appropriate height for them to reach.

Again, you will need to have this available for some time before they get the hang of it so don’t give up after the first few attempts. Build it into your routine. If you do laundry, take them with and show them how to hang the wash cloths. If they do it, make a really big deal out of it and have a reward for them.

See other activiites such as the Pillow Pile, UNO, chores, and the counting basket.

If you like this blog, help me grow this community by sharing these pages on Facebook with families that are also looking for these types of ideas!

Feb
06

Activity: Reinventing UNO the game

When my daughter was young, I did not have the worries of running from therapist to therapist and paying big bills to do so. I didn’t have that option. With guidance from an OT, I would be given a skill to work with her on and then I would invent my own way to conduct it using everyday items I had in the house or could find easily at a garage sale or second hand shop.  After time I got very creative at even combining several skills into one activity.

For example, when I needed to work with Sophia on the skill of sorting and number and color recognition I resorted to handy deck of UNO cards and the infamous cotton rug that was her play mat. To start, remove any special cards so that only numbers 0 through 9 remain. Take out all of the reverse, skip, draw 2, wild cards. Depending on the skill level you are already working with, you may want to start with a 3-4 cards for each color and add more as they advance.  Lay one card for each color at the top of the rug and mix up the others at the bottom. Teach the child by showing them how to sort the remainder of the cards by color. As you lay down the color, say the name of the color each time. This will teach them to recognize the color by name as well as pronounce the word.

 

Once this skill is developed, lay one row of cards across the top of the rug in numerical order. Now show them how to sort the remaining cards by number. Again, say the number as you lay down the card. As with any skill, consistency is most helpful. Leave this activity out for at least a month. Work it into your routine, maybe immediately after dinner. Don’t wait for the dishes to be done, just jump right to it so they begin to expect it.

See other activiites such as the Pillow Pile, Clothesline, chores, and the counting basket.

If you like this blog, help me grow this community by sharing these pages on Facebook with families that are also looking for these types of ideas!

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