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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.

From the time she was a baby until about seven, her meltdowns were daily, scary and exhausting to manage. From throwing things, to running away and hiding, even once in our dryer, she never let us take our eyes off her. She was predictably unpredictable.

After three years of special education, she moved on to a Montessori pre-school successfully and then mainstreamed to a first grade classroom at a private school. In that time she developed an amazing vocabulary, great social skills, loves to read, has great curiosity and a few special friends.

At age six she got her first service dog Truman and although we only had him for a short time, he found her every time she ran away and she has rarely run since he left. She also made a best friend with a girl that lives across the street from us and most days in the summer they are playing together.

At nine years old today, our battles our so much smaller than they were when we started this journey. She is getting her new service dog this week to help her with the sensory issues she still has in public and to be that best friend to share each day and night with. If her seizures develop as she gets older, this new dog will help alert us to them. They are best buds already.

I am so proud of her it at this moment. She is so brave to encounter what she perceived as such a frightening world and yet persistently wanting to engage it. And guess what Sophia, you did it. You made it through some really tough things but all of the doctors, teachers, occupational therapists, special diets, family, friends and service dogs have helped you along the way. This really is a happy birthday.

To all of you still on the journey with your little one, keep faith that every day little miracles are happening whether you can see them or not, and they all add up over time. I didn’t believe we would get here but we did and I’m so thankful to everyone that helped us.

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Continue reading »]]> 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:

• Place an envelope marked “EMERGENCY” on the outside of the visor in all of your vehicles. Inside the envelope, place a paper or index card with the following:My son SHAWN is 7 years old and is AUTISTIC. He has SENSORY ISSUES and does not respond well to loud noises, bright lights or strong smells. If unsupervised, he is likely to RUN or WANDERaway and does not respond to his name being called. If he is missing from this vehicle, please assume he may have wandered or run away until you can confirm he was not in the vehicle.  The best way to CALM him is to move him to a quiet place with dim lighting. His favorite movie is _____ and his favorite snack is _____.He is currently on the following MEDICATION:

  An emergency supply of his medicine is in my purse.

  EMERGENCY CONTACTS:
  1.  Name, relationship, phone 1, phone 2, phone 3
  2.  Name, relationship, phone 1, phone 2, phone 3

  Also tape a recent picture of your child and their full name and nick name

• In your cell phone, add a contact name that begins with ICE and dials to your primary In Case of Emergency contact. This helps medical responders find a contact quickly.
• Have an extra supply of their medicine secured in the trunk or glove compartment if you don’t normally carry it with you in your purse.
• A copy of this card and photo should also be in your wallet/purse if something were to happen to you unrelated to your vehicle.
• If you are in a situation where you can’t move but are conscious and you are afraid they will leave the vehicle, try singing a song with them that they know well. I taught Sophia the Twelve Days of Christmas and use it all the time when we have a lengthy transition to get through. Somehow it distracts her and buys me significant time.

The most important thing is to spend a few minutes thinking through this situation and adapt the message and plan based on your specific needs. If you have anyone else that drives your child on a regular basis, you should consider putting this envelope in their vehicle as well. Even the smallest fender bender can cause a major swing of emotions and sensory processing that can create a very dangerous environment for your child. As my friend used to tell me, “your child is predictably unpredictable.” That means to plan for the worst and hope for the best to keep everyone safe.

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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.

At first, it was embarrassing and scary all at the same time. I was questioning my own experience as a mother. When I shared my concern with friends and family, most of them wanted to find a way to reassure me that it was “probably normal” and she would grow out of it. How was any of this “probably normal?” As most conversations go, I would bring up a concern, they would blow it off and then spend the next twenty minutes making me listen to how their child did the craziest things as a baby.  Frankly, I didn’t want to hear it. To be honest, I didn’t have time. I needed answers, solutions, interventions, anything to help my daughter. These stories didn’t help her or me.

I avoided most of my friends and family for quite a while. It wasn’t a sudden decision I made one day, it just happened over time. Sophia was impossible to take into public anyway so we avoided anything that was not at our house. When people came to our place she would end up upstairs away from them most of them time and I followed her. Over time, we became quite secluded from friends, family and public places. I worked hard to avoid letting people see her meltdowns and catered to her obsessive behaviors just to make it through certain situations. Of course, the more I hid her from the world and our friends and family, the more they had no idea what she was really like.

One day I was dropping off my ten year old son at school and was hoping to pull off a quick stop to the grocery store to get some things without Sophia, now 4 years old, having a total melt down. She could usually handle only one event a day and it clearly needed to be on the schedule. This was not on the morning schedule but I decided to go for it.

“Mommy,” she asked nervously, “we are going the wrong way? I want to go home.”

I let her know we were stopping at the store.

“I want home. I want home. I want home. Pleeeease. I want home.”

Her agitation was building as a sippy cup came flying up to the front of the car. It was a tough decision but I needed to go to the store. No one was available to babysit. Getting out of the car, she grabbed her clipboard, pen and bubble gum. Her knuckles were white as she gripped for something to comfort her as she went into sensory hell for her. She navigated the parking lot carefully avoiding any blemish, painted line or crack in the pavement. As we walked towards the carts she passed the line-up of gumball and toy machines. She obsessively lifted up each metal flap to check inside. I was in a rush. “Mommy, I have to check the machines for candy.” I let her get through all eight machines, never asking for an actual coin. She was searching for order, symmetry, conformity, sameness, routine. Whatever you want to call it, it boils down to sensory safety for her.

I settled her down into the front of the cart and positioned her clip board. “Mommy, it’s cold, it hurts,” she said about the cart. We started in produce and she did okay. She began to get bothered by the cold air and grabbed for a green twist tie to fidget with. “Mommy, I am cold.” I tried to walk as far away from the cereal aisle as possible but could not avoid it.

“Coco Pebbles!” she yelled. We made a quick grab, it was only our sixth box at home and we walked fast before she noticed all of the other gluten based cereals she couldn’t have. She got busy copying letters from signs in the store on her clipboard. Three letters into Pepsi, she yelled, “Wait!” and she made me wait while she finished the other letters. By the third aisle I am realizing I needed more than I thought but Sophia had started to undress in the cart. I calmly pulled her shirt back down and sternly told her to sit down and keep her clothes on.

I had mastered how to predict what would set her off and almost always had a carefully crafted “plan B” in case that happened. If I saw the warning signs that she was “going down” I would find a way to end on a good note instead of a meltdown, even if it meant leaving an entire grocery cart of groceries in the middle of the store so I could leave before she undressed and started screaming.  Unfortunately this time, I didn’t have the luxury of leaving the cart, I needed to check out.

“People are looking at me,” she started yelling and half crying. Yeah, no kidding…I need to speed up, I thought to myself.  Sophia started stimming by repeating over and over “go home, go home, go home”…escalating now into an angry opera. It is loud and people were looking but it’s better than a full scale meltdown. This, I can deal with. I mean singing is good. It’s better than a naked four year old bolting out of the cart and store.

One aisle later she grabbed the bag of bread from the back of the cart and chucked it down the aisle. As I moved swiftly through the last two aisles and promised her we were almost done, she returned to her clipboard and wrote letters while she sang “ABCDEFGHIJKELEMEOPEEEEEEE…”

We passed the deli on the way to the check out. They were sampling something with a strong smell and she plugged her nose. “That food stinks!” she said obnoxiously loud.

We made it to the dreaded check-out lane. As we waited in line, she wanted out of the cart to see the candy. I took her out. She grabbed a pack of her favorite bubble gum and laid on the floor spinning on her back. I tried to pick her up and she tried to run. I left the lane to bring her back. Holding her, she began to hit me to let her down. I let her down and she went back to spinning on her back on the floor. Again, given the choice between her running away, hitting me as I hold her and spinning on the floor…I’ll go with spinning on the floor. I notice now that most people within my vision are watching and probably thinking something is either wrong with that child or that mother for letting her do that.

I wished my family and friends that all said it was “probably normal” and that she would “grow out of it” were here now in the store with me, watching this all unfold. It’s odd that when you are a complete stranger you can make more realistic and honest observations than when it is someone you know and love.

As we left, she headed one more time to check all the metal flaps on the candy and toy machines. I made the guy carrying my groceries wait until she was finished and he seemed annoyed, but screw him. He had no idea what was going on. Hoping to avoid any other irritants to her, we quickly got in the car and headed straight home.

Before I took the groceries out of the car, I carried her in the house, brought her to her room and got her settled in the swing in her room and all that is comforting to her. ..a familiar movie, dim lights, a gluten-free snack and the long row of hot wheels she left so neatly from that morning. As I left the room she took off her shirt, pants and socks and began repeating the memorized lines from the movie.  That will be it for her today. One thing a day.

At this point in our life complete strangers had a better view into my daughter’s true behavior than my family and closest friends.  In some ways, I felt relieved by that. It left my daughter some dignity and helped me to avoid unwanted conversations. However, in retrospect, there is a down side to hiding these wonderful episodes from those closest to you. They never saw enough to understand that something was seriously wrong.  So, when I made vulnerable attempts to tell them how frustrated I was or how scared I was about her behavior and development, some of them thought I had absolutely lost my mind.  It was time to really let the cat out of the bag, so I decided to let them witness a few of these meltdowns and obsessive behaviors for themselves and more importantly for me to be validated as not crazy.

Her behavior was easy to expose and I confess that I knew her buttons well enough to draw out some of her behaviors by pushing the right buttons. I stopped carrying out Plan B escape routes and somehow managed to ask for another cup of coffee as the warning signs of her upcoming meltdown went off. I even took my mom to the grocery store with me one day.

I am not sure what type of reaction I was really expecting, but most of the comments I got were along the lines of “you know, all kids have their moments and tantrums. It’s normal.”  I think some of those people actually thought that making that comment to me would make me feel better. As if I could say “Yes, you’re right.  It’s normal for a kid to have meltdowns over the smell of the free sausage bites, to the point they are hitting their mother with cans of corn from the cart and chucking loaves of bread across the store at anyone close. And yes, every normal kid goes through a stage of being so afraid of a moving grocery cart that they run frantically out the door into the parking lot.”

Whether it was from lack of awareness and education, denial, shame, or baby-boomer optimism, they did not want to acknowledge that anything was wrong or different no matter what behavior I allowed them to witness. I didn’t have time for relationships with people that didn’t share in my concern. My only focus was to figure out what the problem was so I could start helping her. Anyone that couldn’t at least share my concern and help me was an obstacle. I spent every waking hour observing her, researching on the Internet and doing everything I could to get through another day without falling apart.

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Look back advice: You need a partner. Finding one person that authentically understands and cares as much as you do and will help you get back up when you fall, will be the source of energy you need to keep moving forward. This is a long game and it is exhausting and emotionally overwhelming. You need someone that is willing to give and receive little in return. Someone that recognizes their role and will be there to listen to you rant, complain, cry, work out conspiracy theories and send encouraging notes. Whether it is a friend, neighbor or someone in your church or community, find one person.  Your spouse is already in this with you whether they are in denial or not. So try to find someone in addition to your spouse. This effort will payoff for years to come. In time, this one friend will see the same fruits of their labor that you will see and you can be proud of the things you accomplished and the quality of life you have improved for a beautiful child.

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I am asked very often what I noticed early on with my daughter, now diagnosed with PDD-NOS and Sensory Processing Disorder,” that concerned me. I had kept a journal for years about my emotions through this time period. I decided to pull them out and start a series on my blog about my Sensory Memoirs, my journals of Raising a Beautiful Disaster. Depending where you are in the process, I hope these encourage you, strengthen you to help someone you know who is struggling or validate your emotions. Your feedback would be a helpful encouragement to continue with this series, so please share your comments.

Emily

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Continue reading »]]> 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 clerk. When he handed my change back I asked him to break the dollar bill into dimes, nickels, and pennies.  The change would be my fallback if she went through the other items too quickly.

With a renewed sense of confidence I got back in the car. We arrived at the church minutes later and Sophia fled from the car. I went with my son to help him find the other students. My husband took the girls to the front lawn to let them get some energy out before it started.

Once my son was situated, I came back to find them.  I could see Sophia spinning in circles in the front lawn while my husband was sitting on the steps watching her. I sighed, took a deep breath and headed towards her. My other daughter Cecelia was very sweetly playing on the steps and watching the older kids. I could tell from the spinning just how the evening would go.

As I approached Sophia, my husband took Cecelia and went to find a seat in the back. We always sat in the back and near an easy exit. I hated that. I wanted to be like the other proud parents that sat near the front and could talk with other parents before the performance without being interrupted by a screaming kid or the need to explain why I was letting her open band-aids and stick them all over the outside of my purse.

In a fit of denial, pure frustration, anger, or my new found confidence in the loot I had from the quick stop, I grabbed Sophia’s hand and walked right past my husband and Cece to the front of the church. I took a seat, still of course on the end near the exit, but I was close to the front. And it felt good.

As she immediately crawled under the pew, I pulled out the band-aids and handed them to her. I turned to see my husband looking at me very confused as to what I was attempting to do. This was a breach in our family social protocol. Reluctantly, he and Cece came and joined us. “It will be fine” I said.

As she furiously peeled the band-aids and stuck them to my purse, the concert started.  By the third song, we were on to peeling the crayons. Not bad, except my son had not even performed yet. I took a peek to check on her under the pew and she was gone. I turned around and there was no sight of her. As my husband and I stood up to go find her, we saw a little head pop up from the back pew like a jack in the box.

I made a dash for her.  I was sure the noise from the concert was bothering her so I let her wander down the halls, knowing my son was not even on stage yet. When his turn came I was standing in the back swinging Sophia from side to side. She started grunting and making noise with her mouth. I covered it just after it had been noticed by about everyone in the room including my son.

It was time to break out the M&M’s. I carried Sophia back to our seat near the front, taking a few glances from the audience. Our seat was covered in band-aid wrappers and crayon peelings.  My son took the stage and I took a deep breath. Sophia’s candy was just about gone by the time his songs were. That was long enough for Sophia so I took the girls out to the front lawn while the other children finished the concert.

When it was finished, I carried Sophia to find my son and the rest of the family. Of course it would not be a great concert without gluten filled refreshments in their classroom, so we headed that way. Within seconds of being in his classroom with so many people, the smell of food and loud conversations, I glanced to find Sophia sitting under a desk in the corner.

Okay, good choice Sophia, I thought. I attempted to stuff several cookies down as fast as possible and wave to a few people. I hurriedly moved through the art display to find my son’s. I knew he wanted to enjoy this evening and have fun with his friends, but Sophia was now thrashing about and demanding to go home.

So we did. As we always do. This is the moment we added a new social protocol for our family: from now on we are a two car family: One get-away car for Sophia and the other car for the rest of the family. We call it Plan B.

I suppose my husband’s advise to take a picture with my mind was good advice, as I recalled this memory well enough that it almost feels like I’m there again. The problem is that what I remember is Sophia. I remember my anger and frustration. I don’t remember the art work he displayed on the wall. I don’t remember the song he sang or any cute interactions with his friends.

If I were to begin a photo album or scrapbook for my two oldest children today, there would be three years of their life that I have almost no evidence that it existed. From about the time Sophia was 9 months old until about four, I rarely took a picture of my other children. We took no vacations. If there was a school event, my focus was on keeping Sophia preoccupied enough to not have a meltdown or run away and get lost.  We always stood in the doorway or very back of the room so we didn’t draw attention and so there was an easy exit if the whole thing went to hell. I suppose my husband could have grabbed the camera and taken some, but we always make better decisions looking backwards. He always encouraged me to “take a picture with my mind.”

Once I realized Sophia had development issues, I videotaped her for hours on end. My other children made cameo appearances in the background of these and I am now thankful for any little shot of them. Now, I collect photos of my kids from those years, like a detective trying to drum up eyewitnesses to some crime. Bit by bit I am reconstructing the photo memories of that time for their sake and mine as a mother.

The memories are just not the same for that short period of time. They are all dominated by Sophia and it’s not even her fault.  Regrettably, it’s mine. I would have been better to just tag team with my husband or work harder to get a sitter.

We did learn along the way from our mistakes and found creative solutions. But, those years don’t come back, so each event now is treasured a little more special. The lack of photos in their albums during those years represents the reality of her sensory integration disorder and having a sibling with special needs. I can’t take that out of their history no matter how badly I want to. It is their history, it is their family and it’s okay to acknowledge it.

Look back advice: Find a way to tag team events, have your spouse go to one while you stay home with your sensory child and next time you can switch it up. It’s also great to have another parent from the same grade or team that you can explain your situation and ask them to take a few extra photos of your kids while their camera is already out. My advice is to plan ahead instead of winging it and forcing your sensory child to be part of something that they really can’t handle. Better for two or three to go and enjoy the event than everyone go home disappointed.

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I am asked very often what I noticed early on with my daughter, now diagnosed with PDD-NOS and Sensory Processing Disorder,” that concerned me. I had kept a journal for years about my emotions through this time period. I decided to pull them out and start a series on my blog about my journals of Raising a Beautiful Disaster. Depending where you are in the process, I hope these encourage you, strengthen you to help someone you know who is struggling or validate your emotions. Your feedback would be a helpful encouragement to continue with this series, so please share your comments.

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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.

I’m not sure that any of the details were incredibly valuable, but it kept me distracted from visiting anger, resentment and grief in my daily encounters, so that was helpful. On a broader scale, it did teach me a lot about how she responded to things, good and bad. I was her primary “teacher” and I yet I felt like a student taking a Sophia 101 class. Class never really ended and I still observe her closely today to see what she is learning and what she is struggling with.

I must confess that there were many moments in time when my family or friends would be sitting at my house talking to me as I quietly day-dreamed of all the things I would like to tell them from what I had learned. “Can you come back another time, it’s not really a good time right now. Stop trying to hug her all the time. Stop wearing perfume when you come over, she doesn’t like the smell. Don’t stop over during dinner, you’re interrupting her routine and I really need her to eat tonight. Stop buying her Barbies and other useless toys, she doesn’t even play pretend yet. Why don’t you just stop talking to me and get down on the floor and engage her. Don’t tell me to let you know if I need anything. Just ask which day is better for you to watch the kids while I go grocery shopping. Don’t just stand there and watch me struggle to hold her in the middle of a meltdown, do something!  Just get down on the floor and play with the ball with her, she loves that! Stop telling me your parenting stories. Stop telling me “it’s normal.” Can you roll up your window?, she doesn’t like the wind. Don’t sit there, that is her chair. Stop sending me the side effect lists of her medication. Speak slower to her and use simpler words. For the fiftieth time, Gluten is wheat and she can’t have it. She just can’t, so stop making me explain that diet to you!

Becoming a student of her allowed me to find new ways to interact with her, enjoy her and bond with her. My family on the other hand had not even audited the class of Sophia 101, nor listened to the cliff notes I tried to provide them in several conversations. The lack of investment into learning how to relate to her bothered me. It’s hard to tell someone how to be in a relationship with her.  For as much as I try to give suggestions, I continue biting my tongue.

Maria Montessori and her philosophy regarding teaching children has been one of the most influential voices in my journey with Sophia and I would encourage everyone to read more about it. I still look back on some of the journals I kept and the videos I took of Sophia’s daily battle with the world around her. I’m glad I kept those journals.

I still observer her but not to the intensity that I did as I was really getting to know what settled her down and what set her off. This is key to know about your child because it is very difficult to facilitate their interactions without knowing them thoroughly. You may be surprised and amazed at what you find.

As the years went on, I had more questionnaires to complete but I answered with confidence and felt less stress about it. One night, as a social experiment with our family, I brought a questionnaire to our family dinner. Sophia rarely was around during this time as they smell of food drove her to her room. I read the questions and let my other children and my husband answer on a scale of 1 to 5. It actually was helpful to hear them answer and give examples and in a strange way it helped validate that they had some of the same observations I did and were really were in this together.

See also – Making a Video Diary of Your Child

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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!

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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:

1) Make a story. Take digital pictures of you and your little friend and make a story out of it. Use an event such as them visiting your home, or a trip you went on. Laminate it and bind with a three ring binder or a hole punch and ribbon.

2) Make an eye spy game of things in your house for when they come to visit. Take digital photos of items in your house. Print them and paste them onto a card and laminate. Leave them on a hook near your front door for when them come to visit.

3) Make a tool box of gadgets. Visit some resale shops for safe utensils, tools, and small gadgets that they can explore. Example: measuring tape, stop watch, magnifying glass, shoe horn, tongs, compass, tape, thermostat, stud finder, feather duster, spray bottle, note pad, tape recorder – Tape a label with large print clearly identifying each object and a picture of what to do with it. Use clip art or a picture of you using it.

4) Take a picture of you and the child and order a puzzle. Ask their parents what an appropriate amount of pieces would be. 25 – 50 – 100. Go to walgreens.com for other great ideas.

5) Make a personal calendar of pictures of the child. Some children really like calendars and keep track of the days.

6) Make a memory game. Take pictures of things that are special to your child. Make a copy of each item so you have two of each. Laminate them. Have about 20-30 items. This is a custom memory game.

7) Make an interactive doctors kit: Place a teddy bear in a basket with a band-aid on his arm. Add a few boxes of different types of band-aids (great for improving fine motor skills to open and peel them all and put on the bear.) An ace bandage to practice wrapping up the bear’s arms and legs. Add some wet wipes for them to open and pretend cleaning the bear before putting on the bandages. Wet wipes are an interesting tactile sense and also help teach the child skills for cleaning a boo-boo.

8) Pudding painting basket. Pack a basket with different colors of pudding cups and a white vinyl place mat. Add a few paint brushes too!

9) Take one of their favorite foods and put it in several types of containers. For example, a favorite candy or cereal. A quick trip to a used gift shop such as Goodwill and you can find several types of containers for them to practice opening and closing. Screw top ball jar, Tupperware, plastic with latches. This is good practice for fine motor skills.

10) Seek and find tub. Find some small gifts and hide them in a plastic tub of kidney beans. This can provide hours of sensory entertainment as they put their hands in the beans, practice pouring them from one container to the other and finding all of the objects.

11) Rope swing. An eye hook and hardware to install a swing from a joist can be relatively inexpensive. If you have some handy man skills, offer to make and install a swing for the child. It is trendy now to take an old tire, paint it and make an indoor tire swing if you have the room. You can also purchase basic ones with a seat and a rope.  See my review of the swing we bought for Sophia.

12) Big soft pillow. If you have a furniture manufacturer nearby, stop in and ask for them to donate some extra foam scraps. Take two full sheets and sew them together like a pillow case. Put in the foam and sew the last edge. A big pillow to play on and jump on is always good fun.

13) Care for self basket. This basket has a nice lotion, a nail file, a new soft brush, a super soft wash cloth, a super soft bath towel, a vibrating tooth brush, and a hand mirror. You will need to hand pick these things carefully instead of buying a prepackaged basket to make sure the items are sensory friendly.

14) A Polaroid camera. – This is instant gratification!

15) Dancing Christmas toys. My daughter loves getting a new one of these every year.

16) Wii – I don’t know exactly why but autistic kids love these. If they don’t have one, they will likely love it. Parents will too. It is much easier to have a bowling party in the living room than taking your autistic kid to an actual bowling alley.

17) Felt board. Buy some felt at the fabric store. Cover a piece of thick cardboard with the felt. Using templates cut out felt with items such as animals, trees, people, houses, etc.

18) Wind-up toys. You can’t go wrong with these and they are very inexpensive.

19) Spinning tops. Not the most helpful in cognitive development but fun and entertaining.

20) Fort box or tent.Find a box from an appliance. Feel free to paint if you want or leave it as is. Cut out a window or two. Then fill the box with a few sets of sheets, and other fun props for building a fort such as a tension shower curtain rod, flashlight, string, etc.  Put some grommets in the corners of the sheets to create more options for holding up the sheet. There is actually a really great kit available at LearningExpress.com

21) Plexiglass card holder and box of cards.

22) Sound basket: maracas, bells, whistle, train whistle, musical instruments.

23) Bath Time Basket: Bubbles, bath toys, fun shaped soap, bath robe, plastic dishes

24) Light it up: Stick on push lights, flashlights, color spin on the ceiling, glow in the dark items, light up bouncy ball, sun glasses, and light up stuffed animals.

25) If you are a big spender, than I believe the Apple ipad is the hit of the year for autistic kids. They are the perfect size and the touch screen makes it easy to use. There are several autism apps that have been created for speech and other development areas that you can search for on google. They are great for a child to take in a car, in bed or even at a guests home to keep them distracted from all of the change in routine!

Most important – don’t expect the reaction you want. Even if they don’t look interested when they open your gift, it may take lots of interaction and days of processing and approaching it before they can truly understand and engage it. Look for a win-win. Help out the parents by letting them make the most appropriate and most needed purchases and stick to quick and personal engagement with your special friend.

And if you still don’t think those work, check out a few other links to products at Learningexpress.com that might be perfect!

Happy holidays!

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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!

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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!

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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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