SensoryShare Blog

Is it Autism

I have spent three years wondering if my daughter’s sensory issues, language impairment, and developmental delays were all part of something bigger, like autism. When those thoughts came to mind, I would push them away, because it didn’t matter since she was already getting all the services she would be getting if she had a formal autism diagnosis. On the M-CHAT, my daughter scored as “high risk” for autism. But even with a high risk score, it didn’t mean things wouldn’t or couldn’t change. She was only 2 and constantly making huge strides in her development. I was sure that in another year, her “high risk” would become “low risk.” When she was tested again a year later, I was stunned when it came back again as “high-risk”. But people who knew her would say things like, “Don’t worry, it’s not autism. She’s waay too social.” Did I look worried?

Prior to being enrolled in an ESE (Exceptional Student Education) program in the public school system, my daughter was assessed shortly after turning 3. In the evaluation, it was noted that she did not appear to have autism, so I went forward on the assumption that that was correct, and that I needed to focus only on her sensory issues. At the same time, her differences were becoming more apparent when among her peers.

After a few months of being enrolled in the program at the local public school, I received a call from the program coordinator who wanted to discuss a recent team meeting about my daughter. She wanted to let me know about the summer program and then we got on the subject of autism and seeking an official diagnosis. The coordinator, who has personal experience as well, suggested that I take her to a local children’s hospital if it was something I felt like I wanted to know. She explained that there were pros and cons to the official diagnosis. She was walking me through it before it even happened. None of this was really news, but it was news that someone other than me thought this and was now saying it out loud.

Two days before I received this phone call, I read an article that listed the symptoms for autism in girls. By the end of the list I realized I was holding my breath, because a large number of items on the list applied to my daughter. I read it over several times and finally did a tally: I could easily apply 38 of 55 symptoms listed on the described non-definitive list. Several days before that, I watched the ten minute introduction of Sesame Street’s new character with autism with my daughter and as I watched her get enraptured by Julia, I realized they had a lot in common. So, the realization that my daughter may have autism was fresh in my thoughts when I got the phone call from the school. It wasn’t news, but in some ways, it felt like it.

As my conversation with the coordinator continued I wasn’t able to keep it cool. She noticed my cracking voice as I stumbled to find the right words and she jumped in and said, “I know what you are feeling right now. You will go through a grieving process and that’s okay.” I was silent. I listened to her speak, as I struggled to find words. Would I grieve? What was I grieving? I have known for a long time now that my daughter is not like her peers. I knew she was different, she had sensory integration issues, language delays, developmental delays – things that she was overcoming in time. There was no loss here to grieve. Was there?

After the phone call, the concept of grief bounced around in my mind for close to a week when I realized that it was the permanence of autism that was clutching my breath. I had been holding on to the idea that one day – if I did everything I could for her – that things wouldn’t always be so hard for her, because society isn’t made for people who think or act differently. In fact laws have to be written just to enforce equality for those with disabilities, because it may not be considered otherwise.

But the truth of it is, autism is a part of what makes her who she is. And I love my daughter for who she is, with all of my heart. At the recommendation of the school’s program coordinator – the first person to say aloud what had been in the back of my mind – I called the autism specialty center and scheduled an appointment for my daughter to be evaluated in later this month.

 

Sensory Diet: An Introduction

When I first heard the phrase “sensory diet” I thought I was going to get a list of foods that I should or should not feed my daughter based on her sensory profile. Would I need to throw out the gluten? Eliminate dairy? Learn all the various names of sugar so I could tell when it was added into foods? I had never had much success with diets personally, but I knew I would need to follow along with any recommendations from her Occupational Therapist (OT). I’ll admit I was a little relieved when I found out that a sensory diet has almost nothing to do with food.

It turns out that a sensory diet is a list of activities recommended to help your child get the sensory input they need in order to stay regulated throughout the day. A sensory diet is not one-size-fits-all, and should be developed to meet the individual child’s needs. It should include activities that can be incorporated into regular playtime.

At 20 months old, my daughter’s first sensory diet consisted of activities that gave her plenty of proprioceptive input as well as some calming activities. Her sensory diet was broken down into those two subheadings: Calming Activities and Heavy Work (Proprioceptive Activities). From there I worked with her daycare teachers, inclusion companion, and other therapists to ensure that her sensory needs were being met throughout her day, regardless of whether she was on the playground, in the classroom, or at home with me.

Most of the activities on my daughter’s sensory diet required little to no equipment – most things could easily be found around the house or the classroom. The diet we were given by her OT provided some suggested activities that recommended the use of specific equipment like weighted blankets or the disc-o-sit. Stay tuned for reviews of our personal experiences with some of these items over the next couple sensory-diet related posts.

As for food? Well, food actually is a part of my daughter’s sensory diet for oral input – crunchy foods like apples and pretzels are staples for her.

As my daughter has gotten older, I have found ways to help her learn through movement which you can see here.

You can find other great suggestions on activities to help your sensory seeker and/or avoider have fun in a book that I continue to find useful, The Out of Sync Child Has Fun.

Readers – what has your experience been with sensory diets? I’d love to hear your stories in the comments.

A Cautious Mom Raising a Fearless Child

Growing up, I was a cautious kid. I had fears of pretty much everything:

  • I ran out of the movie theatre when E.T. appeared on screen;
  • I bolted out the back door of our house when my mom had a friend dress up as Santa and “Ho, ho, ho!” his way through the front door;
  • After I was informed that the tooth fairy would be visiting me while I slept, I set a trap for her, because the idea of some tiny flying woman slipping under my pillow to take my teeth was jarring, to say the least. I strategically placed fishing line across the doorway in the hopes that her wings would get caught. “What did she even need all those teeth for?:”
  • I never liked to swing too high on the swings or go down steep slides;
  • No one paid more attention to the “Stop, Drop, and Roll” fire safety presentations at school. I even practiced at home, on my own.

The only reason I was ever invited to go to carnivals with friends was so I could hold everyone’s personal items while they rode the roller coasters. I was perfectly content playing the role of the pack mule for my friends. I ran from snakes, lizards, and bugs like it was my job (confession: still do). By age 12, I felt like I could handle the airplane emergency exit plans better than the adults who were sitting there and remember thinking, “Oh my gosh, they are sleeping!”, feeling horrified by their lack of concern for the safety of their fellow airplane passengers.

As an adult, things haven’t changed too much when it comes to my concern for safety, except I do laugh a little during the airplane safety presentations, when it is suggested that if my flotation vest doesn’t inflate, I can use the straw like attachment to blow it up myself, you know… after surviving a crash into the water? Sounds legit. I am a Certified Playground Safety Inspector (CPSI). Yeah, that’s right – it’s a real thing and I am a playground safety vigilante, always looking for a protrusion or potential entrapment situation. I install extra fire and carbon dioxide detectors at home – “just in case”. I keep a first aid kit in my backpack. I am “next level”l helicopter mom when it comes to safety.

As life would have it, I have a child who is fearless – she has absolutely no regard for safety. My sensory seeker runs into streets, jumps and climbs onto everything that isn’t meant to be climbed or jumped off of, and bounces her way through life. She talks to random adults (otherwise known as “strangers”) everywhere we go, and comes home with pockets full of worms. I fear the day she is fast enough to catch a lizard. Taking her to a furniture store is the equivalent of taking her to a soft play place, but without the door charge. As you can imagine,she makes this safety conscious mom’s heart leap into my throat on the daily. Her body is permanently adorned with bruises, bumps and scrapes, but injuries don’t slow her down.

So – how does a safety conscious mom sleep at night knowing that each morning her sensory seeker will be up before sunrise, ready to jump her way through the day/off the walls? Here are a few things I put into place to keep her from getting seriously injured while she performs all her own stunts:

  • Fun-noodles: these are not only fun for pools and sword fighting. They are great to cover sharp and/or hard edges and railings. They also help slow down a fast-moving climber. When she was a baby, I lined her crib rails with fun noodles.
  • Corner guards: These are great and come in a variety of colors to blend with furniture.
  • First aid kits: Injuries are inevitable, but keeping a small first aid kit helps alleviate the worry and when injuries happen, my daughter feels better knowing I am doing something to address her concerns.
  • 6-inch twin mattress: These are easy to move around crash pads. As long as she is going to be jumping, I like to keep a soft landing place available to her.

How do you keep your sensory seeker safe? Share your safety tips in the comments!

The Village Voices

As parents, we always want to believe that the decisions we make throughout the day will provide the best possible outcomes for our children. So when someone comes along and tells us that we need to do things differently, it can feel like a huge blow our parenting ego and affect our decision-making moving forward.

My first meeting with my daughter’s former ABA therapist left me feeling incredulous and angry. I learned early on in our journey that therapists will tell you things you don’t want to hear about your parenting methods. “How dare this woman presume to know anything about me after one meeting,” I thought, “she doesn’t know my child like I do.”

Of course, the therapists do know my child – just in a different way. After that first meeting with the therapist, it took all I had to not call and cancel services. As time marched on, her advice and criticisms didn’t ease up, and I constantly fought the internal desire to fire her. But I didn’t, because the truth is, I had no clue how to handle certain situations, and I needed help. Did I follow everything she told me? No. Did I feel guilty for not doing everything she told me to do? No.

Every night, I go to bed asking myself if I have done enough for my daughter: am I giving her everything she needs to be successful? What have I done right? Wrong? I consider different therapies, research new programs, and question every decision I make. It’s exhausting. On top of all that, the advice and sometimes criticisms of her therapists play on repeat in my mind.

At one point, my daughter was receiving six hours of therapy a week from four different therapists, all of whom gave me instructions on how to do things – and how not to do things. I was constantly trying to compartmentalize all the information and make adjustments. The advice of therapists was a steady soundtrack in my mind: “She needs a sensory break”, “Don’t react”, “Stop anticipating her needs”, “Talk to her more often”, “Order the weighted blanket”. This advice dominated my thoughts, when all I wanted was to be her mom – not her therapist or case manager.

My daughter and I recently reconnected with her first speech therapist. We went for ice cream – she brought along her son and dog – and once we had our treats, we sat down outside to catch up. My daughter climbed all over the seats and onto the table before marching down the sidewalk and crawling into the shrubs. She hunted for sticks, she sang, and she approached strangers on nearby benches. It was impossible to have conversation when every other sentence out of my mouth was a plea for my daughter to come back or sit down or please listen.

Later, I heard from the speech therapist (of course), who said she needed to speak with me about “some things” and give me some advice. “Here we go again,” I thought. We have formed a friendship over the last few years and she has seen me through all the ups and downs of parenting and my personal life, so I knew that whatever she had to stay was coming from a place of good intentions, but I did have to steel myself for whatever advice was coming my way. She advised me that in certain situations I need to stop asking and start demanding my daughter do the things I need her to do. She explained that by asking her if she would do it, I was giving her a choice and some situations – like how to behave properly in a social situation – it isn’t a matter of “choice”.

No matter how often I hear it, and no matter who is saying it – it just doesn’t get easier to hear criticism. Their words always stay with me, long after they have been been spoken, their choir of voices echoing through my head as I try to sleep.

Whether or not I can “do this” is even a thought i’ve had on some of my worst nights – this whole parenting thing. It’s a ridiculous internal argument to have because of course I can and I am doing this parenting gig. I have supportive people cheering me on with their insight, tips, and suggestions.

And just like any successful athlete, actor, or business person, I need to stay receptive and open to the advice and wisdom of coaches and teachers along the way in order to be a successful parent. Does it mean I have to do everything they say? Of course not. But I will let go of my ego long enough to at least consider that there might be a better…or more effective way of doing things. It does take a village, after all.

Sound Affects

My daughter is an earlier riser, so our Saturday morning tradition is to be out and about exploring parks, trails, playgrounds, beaches, and the occasional local event. When she was 16 months old we stopped at a local green market so I could get myself a coffee at a Starbucks nestled into the downtown area of a local beach town where they sell fruit pouches that she loves.

Not long after we entered the busy coffee chain, I sensed that my daughter was starting to feel overwhelmed by the sounds and people surrounding us. I knew we were on borrowed time, and my impatience began to mount. I was prepared to walk out without my coffee. No sooner had I decided on an exit strategy, the barista pressed the button on the espresso machine. The usually innocuous sound sent my daughter into a tailspin, and I was left standing in the chaos of a popular coffee shop on a weekend morning as my daughter went into full meltdown mode.

What was happening? I used to vacuum while wearing her in her baby carrier. She never had a problem with sound before — why now?

I rocked my daughter on the floor, singing her lullabies until her sobbing slowed and I thought we could make a break for the door. To the delight of the other patrons, I grabbed my bag and my daughter and opened the door to make our escape only to have a herd of motorcycles go roaring by.

Cue uncontrollable wailing (from my daughter externally, me on the inside). Although she was unable to tell me what she was feeling with words, I could see the emotion in her eyes – she was scared and in pain.

That day, I learned firsthand that Sensory Processing Disorder is not black and white. Just because things don’t bother your child one day doesn’t mean they won’t the next.

So – how do I get my daughter who won’t wear earphones outside to play without worrying about loud noises? How do I vacuum at home? How do I use a blender? Why is it that loud music is fine but a leaf blower would send her into a tailspin?

My sensory seeker was a mixed bag when it came to auditory input, and I needed help. I sat down with my daughter’s Occupational Therapist the following week to discuss strategies. Some things that helped us:

  • We started watching short clips on YouTube of motorcycles, trains, and airplanes and talking about what they do and how they sound. Then when we saw them in real life, I would point them out from the car window to familiarize her with them.
  • I found toys that made the actual sounds that a vacuum and blender make. We put her in control of making the sounds and that helped a lot. Bonus for parents everywhere: the vacuum actually sucks dirt too!
  • I mimicked covering my ears when things were too noisy, and my daughter caught on.

These simple strategies went a long way in helping my daughter with loud auditory input over the course of a couple months.

Eventually, my daughter grew accustomed to these sounds and even began to vacuum with me.

Now as a toddler, my daughter will say something like, “It’s okay mommy. It’s just a train,” while we wait at a railroad crossing. She often hears things before I do, so when I see her cover her ears, I expect to hear the sound of a distant lawnmower or leaf blower and within a few moments, I can hear it too. And we can hear it all without a Starbucks-style meltdown.

Sensory Playroom Garage Transformation

Before I even moved my belongings into my new home, I knew that I would never be parking my car in the garage. It was the perfect place to put together a sensory-friendly playroom for my sensory seeker, and inspiration hit as soon as I saw the space.

However deluxe my ideas were, I was on a budget and needed to figure out how I could turn the concrete shell into a place that my daughter would benefit from, playing safely in the space while having her sensory needs met.

My first concern was the concrete floor. I knew I needed a soft impact attenuating surface. An online search turned up a great product that was both affordable and easy to install. I installed 190 square feet of the foam flooring, covering approximately ⅔ of the entire floor. I was able to do this on my own within an hour. The pieces locked together easily and have stayed together without any problems. I even had to fold the floor up once to put my car in during a hurricane, and it easily went back down without breaking apart.

Clevr Foam Floor

$79.99/96 sq. ft.

Once the flooring was laid, the equipment came next.

For anyone needing proprioceptive input like my daughter, the trampoline is a ‘must-have’. She can jump for hours at a time and it was a perfect fit for her and the space. The trampoline required assembly. Stretching the safety net was the hardest part and definitely required more than two hands. I hired someone to help me build the trampoline.

My First Trampoline (with enclosure)

$139.47 (without installation)

If you order this on Amazon, you can even opt for an expert to install it along with delivery for an additional fee. This trampoline is the perfect size for children and can hold a lot of weight – we have had 4 kids jumping at the same time and even I have gone inside to jump with my daughter (video evidence not provided).

6-foot play tunnel

$14.98

This fun tunnel gets your sensory seeker crawling on all fours, which helps with balance and coordination. Obstacle courses are helpful when you’re teaching your little one how to follow directions, and the tunnel is the perfect addition to any course.

If your child is unsure about crawling through, you can always place something she likes such as beaded necklaces or balls from the ball pit throughout the tunnel and ask her to collect them on her way through for motivation.

Soft plastic fun balls

$8.21 (100 pieces)

Ball pit

$11.99

The ball pit is an easy and exciting addition to any sensory playroom. It’s light enough that it can be moved around to the exit of the trampoline for some additional fun. The colorful balls provide an enjoyable way for your child to practice naming colors. We’ve found that babies love the ball pit too, so this is the perfect spot for any infants you have in your life to enjoy the sensory room, too.

Sock ‘em Boppers

$9.99/pair (colors vary)

Pool noodle

$2.19/each

The boppers and noodles are great for games, and the options are endless for incorporating these into obstacle courses or just fun free play. (Make sure you’ve got quick reflexes or you might get a wallop…I know from personal experience!)

The pool noodles are excellent for rolling on, jumping over, and pretending you have go-go Gadget arms.

The boppers are an entertaining, gentle (we hope!) way for your sensory seeker to get proprioceptive input.

Sidewalk Chalk (24 ct.)

$2.47

Every play space should encourage creativity, and chalk art is a positive way to explore colors while developing eye-hand integration skills as well as motor skills like grip. I left ⅓ of the concrete floor uncovered for a chalk art surface. The chalk dust gets on the foam floor at times, but it wipes up easily.

The decor is of course up to you. I chose Frozen posters (yeah, I know…) but the possibilities are endless!

I Knew Something Was Different

At the age of four months my daughter was adopted and I became the mom of a beautiful girl. Like most new moms, I had no clue what I was doing, and my daughter’s constant discomfort was making me feel increasingly unsure of myself. She was stiff, disinterested in cuddling, had terrible reflux, and was already missing milestones. I started reading, sure that all the changes she had gone through were the culprit to her unhappiness. I was sure that if I could figure out ways to help her through the transition she would warm up to me and get on track with development.

As we bonded, she continued growing and eventually hitting milestones 4-6 months behind schedule. Her pediatrician was not concerned and reassured me that all babies develop differently. I wasn’t so sure. My interactions with my baby were not like the ones I saw on social media or at daycare. Was I doing something wrong? She was stiff to hold. She wasn’t interested in food and still wouldn’t hold her own bottle. She seemed like she was in a fog. Her differences were minor, but together, they were adding up and weighing on me. I kept reading anything and everything about delayed milestones with a feeling of uncertainty.

One day I dropped her off at daycare and I turned back to watch. Our daycare drop-offs were always easy. She didn’t cling to me like the other babies did to their mommies. I watched through the door as they placed her at the table with the other almost 1-year old babies who were feeding themselves cheerios and babbling with each other. They moved her to a seat with the wall behind her and my heart dropped, because I knew why. Almost as soon as she was seated she began rocking hard in her chair, staring at the table in front of her. She made no effort to reach for a cheerio. She had no interest in babbling or even looking at her peers. She rocked harder and harder until one of the teachers had to go stand near her and place her hand behind her head. It was in that moment that I knew: my kid was different.

My heart sunk deeper as I walked to my car and cried a big ugly cry. I felt alone, lost and overwhelmingly sad in that moment. The tears fell heavy and hard. After I dried my eyes, I called a friend who had gone through a similar situation, and she told me what to do. I called the pediatrician and demanded a referral to the early intervention program. I took my daughter for a hearing test and an electroencephalogram (eeg) and scheduled an evaluation.

She was immediately approved for speech therapy, followed by occupational therapy, behavior therapy, and eventually physical therapy. She was testing as high-risk for autism on the Modified Checklist for Autism in Toddlers (M-CHAT), but her neurologist wasn’t convinced that she had autism. Her Occupational Therapist then told me about a sensory diet. If you’re wondering if you are the only one who thought that a sensory diet had something to do with food, you aren’t. I had previously never heard of sensory diets and sensory seekers/avoiders, vestibular input and proprioceptive input. These were all new concepts to me and my head was spinning.

I spent nights lying awake and digging through the Internet to find information about Sensory Processing Disorder (SPD). I struggled to wrap my head around what this meant and how it would affect my daughter The information I found was scattered and not always accurate. My daughter is now 3.5 years old, and I continue to learn and research ways to help her. There is no cure for SPD, but there are resources and support available. I have found success with a new sensory play game and support in the words written by other bloggers. I have laughed and cried alongside strangers in Facebook groups because I can relate so deeply to what they share. Similarly, I have celebrated achievements and late milestones of those I have never met, because I know how good it feels to see something happen that you were once told may not be a possibility. Our experiences may be different, but we can all find common ground in our journey for knowledge and understanding of Sensory Processing Disorder.