Those Crazy Senses

Once upon a time I wrote a blog entry called “What Is Sensory Processing Disorder, Anyway?” In it I gave a brief overview of some of the things that can be involved in Sensory Processing Disorder. I tried to explain how SPD can affect the seven senses – yes, we have seven senses: touch, sight, smell, sound, taste but also our vestibular sense (sense of balance) and proprioceptive sense (the input from our joints). However, what many don’t realize, and what we ourselves have had to learn over the last two years since I wrote that article, is that SPD can even go much beyond just affecting the “seven senses”. It can be so much more than being sensitive to loud sounds, bright lights and certain touches. SPD can lead to many other neurological and physical issues.

Sensory Processing Disorder can lead to issues physical issues with low muscle tone, fine and gross motor delays. It can lead to neurological problems with motor planning and visual tracking issues, all of which can end up creating learning disabilities or challenges. It can cause emotional problems with anxiety, depression and behavior challenges. It’s often co-morbid with other disorders such as Autism, ADHD, Tourette Syndrome and others.

It has been almost three years since our son’s diagnosis with Sensory Processing Disorder. He has made huge strides, and we have especially noticed a huge improvement in his sensitivities between the ages of 7 and 8. We were told by other “SPD parents” that the 7th year seemed to be a turning point, as they often gain great strides in coping ability. That certainly was the case here.

Our son bathes like a champ now, though hair washing is still not his favorite thing to do, and we have to make sure his face and eyes are covered. He is also now learning to swim, and in the deep end, too! He is even starting to play in water sprinklers. He has no problem at all with public washrooms now, though he will still ask if the toilet is going to be loud. Overall he is coping much better with loud sounds, though sudden, unexpected loud sounds are still upsetting to him (this is a polite way of saying that they can leave him crying and shaking so badly that I have to carry him out of the area).

While introducing new foods is still a challenge, he is now eating all meats like a pro – we could almost forget there was a time that asking him to swallow meat would leave him crying and gagging and spitting it out in the garbage. While he still hates socks and rips them off at the first opportunity, he willing puts them on now, and we’ve finally gotten him wearing shoes other than his rain boots. He still doesn’t like his hands being sticky, and pretty well refuses to use glue, but, he is getting far better at coping when he comes in contact with sticky stuff.

So, while he still has some sensory “quirks”, he has made incredible strides; and we find the biggest improvement is that he now able to better vocalize his concerns, and ask us about the things he is worried about. This is a huge step because it allows us to better gauge how he is feeling, and thereby in turn we can prepare him better for what might be coming.

However.

As his issues with the main fives (okay, seven) senses have been improving, new issues have started rearing their head. When our son was first diagnosed, he was five years old, and truly not functioning like a “normal” child his age should in many areas – after all, getting dressed, bathing, washing his hair, eating, coping with public settings such as washrooms etc… were very difficult challenges for him. At that time, our goals were focused solely on those areas, and we just didn’t “see” the other challenges.

Over the past year, it has now become the other side of Sensory Processing Disorder that we are seeing, that side that few people have any understanding of. As original challenges diminished, we started realizing that our son was dealing with many other struggles. We had him reassessed, and the final results of three different tests from two different occupational therapists came in that our son was over the 90th percentile for sensory dysfunction – meaning, there isn’t much that he processes correctly when it comes to sensory input! And we were just now starting to see how it affects him in the other ways of life.

So… how does it affect him?

His OT suspects he may have some issues with Dyspraxia or Dysgraphia, as well. Dysgraphia and Dyspraxia are both very common among children with SPD, since at their very core, they are caused by poor sensory integration. Now, in our son’s case, he has excellent drawing skills, and his writing is fairly neat, however, in just about every other way, he is quite behind in his writing ability. Almost every single step of the process is difficult for him – from organizing his thoughts to the physical act of getting them on paper. He struggles with how much pressure to use, margins, word and letter spacing, and letter sizing. Even now he’s constantly mixing up capitals and lower case letters. He is extremely slow at writing, and copying text (from a board or a page) is challenging for him – so much so that it can cause meltdowns. This may not sound like such a big deal, but when you have a student entering grade 3 who is struggling to produce the written outcomes expected of a kindergarten or grade one student, it  becomes an issue.

Our son also has what is called joint hypermobility and which can be associated with SPD. This largely contributes to his physical issues with writing, as even holding a pencil to write requires physical compensations (ex. how he holds the pencil, how he sits, positions his arm etc…) which causes him to tire quickly when writing. But the challenges go beyond writing. He has troubles with typical fine motor skills such as tying shoes (it certainly grieves him that his 5 year old sister can tie her shoes, and he can’t), putting on gloves, sometimes doing up certain zippers, using a knife (he has only recently mastered buttering bread and he still cannot cut food at all), opening packages such as chips, candy etc…  He struggles with gross motor skills such as throwing and catching balls, how he walks and runs (you’ll notice he often keeps his arms held out to the sides for added stability), his posture (poor) and how he sits (slouches, or leans with support).

Our son also was diagnosed with Tourette Syndrome at the same time as his Sensory Processing Disorder, which is a common co-morbid neurological disorder. He has both vocal and motor tics that are always present, however, thankfully thus far, the tics that he has are ones that are subtle enough gestures that they aren’t normally noticeable to others outside of the family. Tics can be a form of a sensory seeking behavior, hence why there is often an overlap.

And so, these are the issues we are working on now. Our son continues to receive weekly “swim therapy” lessons, and also is now taking horseback riding lessons which are helping to improve his core strength, balance and posture. He is overseen by an occupational therapist, and we are on the waiting list for a physical therapist to help us with hand exercises to improve his fine motor abilities, but also help us work on strength training . One of the risks of joint hypermobility (especially in active children!) is the increased risk of injury due to unstable joints.

At home, thankfully, since we homeschool, I have great ability to work with him on his writing, and we use a handwriting program that was given to us by his OT. We also try to work with him every day on the simple, every day tasks that he struggles with, as they come up. The rule in this house is – you have to try to do it yourself, before you can have help. And even then, we try to show him, and then make him do it.

Our son has made great strides in his sensory disorder and we are very proud of him. But (blessedly) his “disorder” is an invisible one, so to outsiders, he looks and acts like a typical 8 year old boy – he’s a happy, smiling, laughing boy who runs, jumps, plays, pretends, loves Lego, Pokemon and super heroes (Batman is his favorite) and has light saber battles, just like any other boy. Few people really know what goes on behind the scenes at home with his sensory disorder, so it can be very hard for them to understand why I get so proud of him for writing two sentences, when others his age are writing a page. Or, for running through a sprinkler (he does not like the feel of cold water, and does not like being splashed), or for opening a bag of chips, or for getting his hands sticky and being able to wait calmly (albeit perhaps a bit anxiously) until I can wash them. And so that’s where we’re at now!

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1 in 68

It seems today’s society thrives on labeling things and categorizing them into neat little statistics. Millions upon millions (probably into the billions) of dollars are spent every year completing surveys on just about everything under the sun – from how many people prefer summer to winter. How many people eat fast food compared to who are vegan. From how many families are now divorced to how many couples skip marriage completely. And of course there are statistics on every disorder and medical condition under the sun.

My children are part of the statistics world. Both of them have disorders that have been studied for prevalence. My son is 1 in 20. He has Sensory Processing Disorder, which it is estimated that 1 in 20 children have, to varying degrees. But what does that really tell you? It tells you nothing about my son, or his struggles, or his triumphs.

For example, 1 in 20 does not tell you that he loves birds, drawing, that he loves to read, that he sings while he’s using the bathroom, or that he thinks farts are one of the most hilarious things on earth. It does not tell you that one of my son’s struggles is with balance. Granted, this is far from his most significant struggle, but this issue with balance has in turn has made things like learning to skate, to ride a bike, and to swim, very difficult for him. Things that almost all his other friends have no problem doing.

Thomas has been in private swim-therapy lessons for two and a half years now. When he first started at five, he could only wade a little way into the water, could not put his face in, get his hair wet, or stand even the smallest of splashing. Last summer, even at seven years old – when all his friends were jumping in the pool, swimming, splashing and having fun, he was struggling to walk in water that went further up than his waist. He would not even let me carry him around the shallow end of the pool with a life-jacket on. Pushing the issue would result in screaming, tears and sheer panic. And so, last week during his swimming lessons when he swam the entire length of the pool with a life-jacket on, clear out into the deep end – I was jumping up and down, cheering him on, with tears of pride in my eyes. For 1 in 20 does not begin to tell you what a huge accomplishment that was for him.

Our daughter Ashley is technically two statistics. She is 1 in 100 – the number of children that will be born with a heart defect. But that doesn’t tell you that her favorite colors are pink and purple, or that she loves painting fingernails – not just hers, but anyone that she can round up. That tells you nothing about what her struggles were like that first year. What it was like to have a child on a feeding tube, what it was like to have to take your baby for blood work every single week, to be preparing yourself mentally for handing your child over for a surgery that would stop their heart. It doesn’t tell you what it means to us every time we look at her today, the picture of health, running strong and hard, scar-free.

And then there is her other statistic – 1 in 68. The number of children today that are diagnosed with Autism Spectrum Disorder. But that doesn’t tell you that Ashley loves Barbies, gymnastics and dance, keeps begging us for a pet dog, or that despite her tiny size she has a roar like a lion! And it certainly tells you nothing about what her life with Autism is like.

1 in 68 doesn’t tell you that she is just shy of five yet still in Pull-Ups. That statistic doesn’t tell you that 90% of children with Autism have bowel issues, including chronic constipation. It doesn’t tell you that she is on medication that leaves her soiling herself. It doesn’t tell you that this chronic constipation also leaves her with urinary incontinence. Or how badly she hates having to be in a Pull-Up.

1 in 68 doesn’t tell you that despite having an excellent vocabulary and expressive language, she cannot carry a conversation with peers. She will often ignore what someone has said, or will reply with something completely off-topic. She does not understand the give and take in conversations, the pragmatics of speech, and she does not understand figurative language at all. Anything you say to Ashley is taken completely literally. This often has her getting upset at something that was meant to be funny.

It doesn’t tell you how I sometimes dread play dates. She struggles playing with children her own age. She will stay with them for a few minutes, but then often just wanders off, leaving them completely on their own. How my heart aches when that child comes downstairs saying, “Why won’t Ashley play with me?” It doesn’t tell you how I worry about her social skills and what they will be like as she gets older.

1 in 68 doesn’t tell you about her intense need for control. What others see likely as “bratty” behavior, is her struggling to have some sense of control over a world that is completely out of her control. It doesn’t tell about her extreme independence, how she struggles asking for help, how she prefers to do things for herself – even sometimes at the risk of hurting herself or getting into trouble with us. It doesn’t tell how when life just gets too overwhelming, too stimulating, too tiring – she melts down. How she will scream, lash out and stomp up the stairs, slam doors, perhaps throw things across her room, and often cry herself to sleep.

And we let her – for when she has reached this point, no amount of talking, reasoning or discipline is going to make it better. She needs to release her own overwhelming feelings, and as long as she is not hurting anyone, we let her work it out. For when she reaches this point – our own attempts at comfort, often make it worse. 1 in 68 doesn’t tell you how it feels to be unable to comfort your child.

It doesn’t tell you of her sensory issues – how this same child that has an extremely high pain tolerance, can scream and cry when I try and brush her hair. It doesn’t tell how she struggles with transitions and fixations. She likes to know what is going to happen and when – and heaven help you if that changes. Once she has something in her mind, that’s it. She will repeat it over and over again until it happens. If something happens once – such as getting a Slushie after swimming lessons, she automatically thinks that means it will happen every time, and then gets upset when it doesn’t. It doesn’t tell how she gets overwhelmed in public spaces, and this results in a need to run or move almost non-stop. Or that I know we’re getting judgmental looks for our “undisciplined” child, from those who don’t know her or her struggles and needs.

1 in 68 doesn’t tell you how hard we work on all these issues. For at the end of the day, we will not allow her diagnosis to be an excuse for doing whatever she wants, when she wants. Negative actions have consequences, though they are generally dealt with later, once the storm has passed. And they often need to be worked on in ways other than what most parents would use. Sadly, Autism is often misunderstood by others because it is an invisible disorder – all people see are the behaviors, and not the disorder behind them.

There’s so much that 1 in 68 will not tell you. It will never begin to touch on the struggles of Autism. Nor, it’s joys. And don’t be fooled – there are so many joys hidden in Autism. For, as much as Ashley struggles with peers, she plays well with older children and adults. Even with peers, she is capable of joining in on group games like tag, chase – games where you do not need a lot of one-on-one communication. She loves to run around and play with children, and her laughter will sound across the yard. And when she laughs, she laughs with her whole body – it is vibrant and infectious. You cannot be around Ashley when she is laughing, and not smile or laugh, too.

Some of the things that are frustrating for us – like her determination to get into everything, are also some of the same things that bring us much laughter and even pride. For example, she would not stay out of the pantry. She would constantly go in and steal snacks no matter what the consequence. So we installed a chain latch up high. So, she figured out how to grab a broom and use that to pop the chain out. We then locked the broom in the pantry. She then went to the basement, got the mop and used the mop to pop the chain. As frustrating at that was – it only goes to show her excellent problem solving abilities, and the humor of the situation was not lost on us!

Every day Ashley leaves her mark on the house – and I don’t just mean through messes. She likes to arrange things, and while to us there is no rhyme or reason to what she does, I know somewhere in her mind, it makes sense. Like leaving a hat hanging off a wall light switch. Or, using my seamstress tape to tie the light-switch to the doorknob. Or arranging a toy to sit just so on the entertainment center. These little quirks always bring a smile to our face, as we marvel at her creativity, or laugh as we ponder, “What was she thinking?”

As a toddler, Ashley was very much content to be in her own world, alone. She did not often seek out our engagement. Recently Ashley took to grabbing our chin and pulling our face around to look at something. It was her way of getting us to look at what she was looking at, her way of reaching out to us saying, “This is something I find interesting, share this with me.” Though we have since taught her to ask, I admit, I did, and still take, pleasure in the feel of her hand on my face. It’s the feeling of connection, something I have learned not to take for-granted.

The thing about statistics is that life is so much more than a number. And it’s all these things that the number will never tell, that make life what it is – perhaps full of struggles, yes, but also full of learning and triumphs. For this statistical life teaches you to learn to appreciate the small moments, the simple triumphs, to celebrate the minute moments. What’s more, you realize that it’s all these small moments that most take for granted, that are really the big moments that you’ll remember forever.

Playdates

When you have a child on the spectrum, playdates can be hard. Yes, even for us high-functioning parents. Playdates are necessary – every time you participate in one, you are giving your child a social learning experience. And yet… sometimes for the ASD parent, they’re an in-the-face reminder of where your child is not, developmentally. Oh, I’ve long given up on the checklists – all children develop at different rates. But let’s face it, at the end of the day, there really are some general developmental milestones that children have mastered by certain ages.

Honestly, it can be easy at times,  for a parent (and the family) of a high-functioning autistic child to forget that there’s anything wrong, because they can seem so normal at times. In fact, new studies show that females are often harder to diagnose, because they frequently present with different symptoms than males (and the screening questionnaires are all based on the stereotypical male autism traits). For one, most studies show that females with HFA/Asperger’s syndrome, are far more likely to play with toys appropriately and have imaginary play skills, than males. Females tend to be more socially interested. Females also are far quicker to pick up skills through mimicking, than boys, and studies show that females often are able to hide their symptoms through learning to compensate in other ways.  All of these are ways that can make it far harder not just for family and friends to recognize autism in a female child, but even professionals.

For our daughter, we’ve learned that over time she gets into comfort zones. And when within those zones, honestly, she truly can look and often act like a perfectly neurotypical child (I prefer to say neurotypical than normal, because, to quote Whoopi Goldberg, “Normal ain’t nothing but a setting on a washing machine!”). For our daughter, that “zone” means inside our home, as well as a couple other familiar homes, and/or when with familiar people. There are  some public places she’s grown very comfortable in as well – the swimming pool where we go for weekly lessons, and the dance studio.

To see our daughter in our home, honestly, it’s often hard to think of her as autistic. Especially for an outsider, or someone who is not with us frequently. She’s affectionate, speaks well, and is engaging us, and others, more all the time. Granted, we (those of us with her every day) still know the “quirks”, such as  her finger stim that comes out when she’s excited or stressed or struggling with receptive speech. There’s her sensory issues that we’re working on, and of course her controlling, rigidity issues. And while to an outsider, while in her comfort zone, it may look like she has phenomenal verbal abilities/imagination during play, we know that much of it is scripted/mimicked, picked up from tv shows, movies and her big brother (that said, thanks to ABA therapy, her own imagination is improving by leaps and bounds all the time).

All of this to say… we had a play date with a friend of mine today, and her two children. Her son is only a year or so younger than my son, and their daughter is roughly a  year and a half younger than our daughter. It was so great to get together, and have adult conversation – I even got to drink an entire cup of coffee before it got cold! Our sons had a blast playing together. Our daughters had fun playing as well. However, as I was there… I could see the difference. Her daughter, at two, spoke more than my daughter, at almost four.  Her daughter displayed better imaginary play skills. Outside her comfort zone, and without her big brother there to glean ideas and phrases from, our daughter roamed from toy to toy, stopping to use one for a few minutes, and while using them appropriately – used them silently, without any noises or imagination. Ashley rarely attempted to engage my friend or I, while my friend’s daughter certainly did so. While Ashley would chase the boys upstairs to the bedroom to play, her silence came through loud and clear on the baby monitor – letting me know she was self-absorbed in something, instead of trying to join in the play.

As my friend was sharing some of her daughter’s two-year-old antics, common escapades that any child that age would do, I would comment how our daughter would do the same thing! While there I witnessed my friend’s daughter’s cognitive skills as she was going over the letters she’s learning, and I thought again – Oh! Ashley’s learning her letters, too! I thought it cute they had so much in common. Though, later as I thought on this,  there was that moment of feeling like, “Y’know, is it actually cute that my almost four year old, still has that much in common with a two year old? That she’s still trying to learn skills that most have mastered by now?”

I won’t lie and say that it doesn’t make my heart twinge a bit at times, but honestly? I’m okay with it.  Ashley is being who she was meant to be.  She has had a lot to overcome in her short life – and I think she’s doing an incredibly amazing job of it. Yes, the play date in a sense was a reminder that she is definitely behind her peers socially, but it was also a reminder of all the way’s she’s improved, too. And she has come so far in the year since her diagnosis, especially when out of her comfort zone. For one, her eye contact has greatly improved with unfamiliar people. While she may not engage us as much as a “typical” child – she is still very content to be perfectly all alone, she is seeking us out in play far more than she used to. She is  also learning to seek out our help, which is huge! She is also engaging her peers more, too.  And thanks to therapy, her expressive vocabulary is phenomenal, I’d even dare say advanced for her age, which is clearly evident when she’s trying to tell us off!

And so, instead of feeling sad that she’s not at the same peer-level, we’ll learn from today, and all the other future playdates. We’ll use them as a way to help us work on those areas she still needs some help. And we’ll continue to proud of all her achievements.

Faces of Autism

Close your eyes. Now, I want you to think about the word autism. What sort of image does it create in your mind? Do you see a little boy chasing other children, laughing? Do you see a little girl in pigtails dancing? Do you see a quiet, well-behaved child in a shopping cart with their mother at the mall? Do you picture an affectionate little girl, having a tea party with their dolls? Or, do you see a child rocking back and forth, flapping their hands? Beating their head off the wall or floor in a screaming meltdown? Do you see a child incapable of smiling, laughing or making eye contact? Do you see a child incapable of talking?

All of those images could be children with Autism Spectrum Disorder.

Perhaps one of the most common, and also most disliked comments parents of children on the spectrum hear is, “But he/she doesn’t look autistic!”  Whatever the intention behind their words,  the comment is one that is met with a myriad of emotions by ASD parents. The comment can spawn feelings such as anger, hurt and frustration, and also can make the parent feel isolated and alone, like no one understands. Some admitted to feeling like they felt that people thought they were making it all up. Too often, the parent keeps their feelings to themselves, instead of letting the other person know how the comment makes them feel.

Generally, I don’t think the comment is said with malice. In fact, I think often, the person is probably trying in their way to reassure us, or just doesn’t know what else to say. But, in the end, the comment generally comes from ignorance about what Autism “looks like.” Far too many people associate Autism with the publicly stereotyped behaviors such as hand flapping, rocking and head banging. They assume that people with autism are socially inept, cannot making eye contact or are incapable of having well-developed speech. But all of these are possible with children on the spectrum, to varying degrees.

Often, people seem to think that there are also physical markers, such as those common in Down Syndrome, or  other chromosomal disorders. One woman remarked about being told her child was, “Too cute to be autistic.”  It’s easy to see how a comment like this could be hurtful to a parent, with it’s implication that autism is supposed to make a child less attractive.

Autism is called Autism Spectrum Disorder for a reason – it is a spectrum. By the very definition of the word it has an incredibly wide range of symptoms, and those symptoms affect children in different ways. Children with ASD also have a wide range of abilities and disabilities.  The new catch phrase for Autism, coined by many doctors and professionals is, “If you’ve met one autistic child, you’ve met one autistic child.” All children present differently.

For those children who are severely affected, it is easier to “see” their disorder. However, for those children who are on the mild(er) end of the spectrum, for someone who does not have daily contact with the child, unless you know their idiosyncrasies, it may be hard to see the “signs” of Autism. Also important to remember is that children with Autism often improve with therapy, and behaviors that were present at diagnosis, may no longer present a challenge.

And so today, I want to introduce you to several children with Autism. These children all come from different walks of life, they all look different, they all have different strengths and weaknesses. What they all have in common is that they all have varying levels of Autism Spectrum Disorder. Take some time to read their stories, and learn about the different ways that ASD can affect a child, bearing in mind that for each of these families, these are mere samples, not a full list of all their idiosyncrasies. See for yourself the huge variance in abilities and behaviors among life on the spectrum. Learn for yourself what the faces of Autism can look like.

 

 

DSC_0084  Ashley, 3

This is my own daughter Ashley, she’s three and a half. She loves to dance, and loves Cinderella. She was diagnosed with Autism Spectrum Disorder just a few months shy of her third birthday. When she is with familiar people it can be almost impossible to tell she has autism – she is happy, bubbly, affectionate, makes eye contact, plays and loves to chatter – she “looks” normal. And yet her challenges are very real.

Ashley speaks well expressively, but has delays in areas of receptive language. She might act as though she’s ignoring your question, when in reality she’s just struggling to understand it, or her answer may not make any sense (be very off topic). She is also very literal, and many social pragmatics are lost on her. Saying, “Oh aren’t you cute?” or calling her a pet name like, “My little princess”, will promptly earn you the response, “I not cute, I Ashley.”  On a good day, she will just calmly correct you, but if she’s having a bad day, this slip of the tongue can upset her, and she will scream at you.

She can get overwhelmed in new places or with unfamiliar people, especially males. When this happens, she pulls her “Retreat Maneuver” – her head goes down, she loses eye contact, will not speak, and she starts stimming with her fingers. Sometimes she’ll grind her teeth back and forth as well.  This can also happen when she’s struggling to understand a question. Sometimes  she gets over-stimulated in places like church, stores, even the library. When this happens she becomes hyperactive, and will run off on us if we’re not careful.

She is an empathetic little girl, but while she recognizes and can label other people’s emotions, she cannot label her own, or verbally express them. She has issues with rigidity and control. She can get fixated on things being a certain way and disruption to her physical surroundings can really upset her. We call her our “Just So” child. Her rigidity can lead to significant meltdowns. And while any three year old can throw a tantrum when they don’t get their way, there is a difference between a typical tantrum, and an autistic meltdown. She can go on up for up to an hour, can be very aggressive towards those around her, will throw anything within reach, will knock furniture down and will try to use evasion tactics such as trying to force herself to poop her pants.

She has several different sensory issues, including certain noises – loud music can either send her to the floor shaking and crying, or set her screaming. She is an oral seeker and will still  put inappropriate things in her mouth, she also loves to eat odd things like spoonfuls of flour.  While improving, she normally does not like close contact and doesn’t like to cuddle or be held close.

She has limited fear, because she struggles grasping the concept of danger. For example, despite having burned herself on it twice (thankfully minor both times), we have to constantly teach her why she can’t play near, or touch the wood stove.  Complicating this is her high pain tolerance. It’s hard to teach the related concepts of fear of pain and the threat of danger, when you don’t feel that pain. She constantly is hitting her head on things – often times hard enough to cut herself, and yet will show no sign of pain. We often do not know she’s hurt herself until we see the blood ourselves.

While she is now quite a little social butterfly with peers, what most don’t realize is that this did not come naturally to her. That is perhaps one of the biggest misconceptions people have when they see a high(er)-functioning Autistic child. They see the child behaving “normally” and instantly assume that it means they were misdiagnosed, because in their mind, children with ASD are incapable of acting “normal”. However, this assumption is very wrong. Many children on the spectrum are perfectly capable of of acting “normal” – it’s just that those skills that come naturally to “normal”  children, have to be taught to our children through intense therapy.

 

Anna Anna, 3

Anna’s autism has been different from the current stereotypes. She loves to cuddle, to hear loud noises, and to be with others. But her lack of speech and minimal imitation skills leave her uneasy in unfamiliar situations. Sometimes she cries or laughs hysterically and we don’t know why; these extreme emotions can change in a moment, and come without warning. The twirling of her hair, grinding her teeth, and sucking her thumb, are signs that she is experiencing stress or discomfort.

She is very sensitive towards others’ tones and moods, though she doesn’t always know how to handle those emotions, or how to express how she is feeling. Anna does not speak or sign, and so figuring out her needs and desires, or why she is feeling what she’s feeling, is nearly impossible. Despite these challenges, Anna is very fond of her immediate family members, and usually keeps an even temper (excepting those moments of extreme emotion).

She is a fun, silly, sweet little girl, and while we do give her therapies to help her be more independent and to prepare her for the future, we still would not change her for the world. Her autism has given us a new perspective on the world, on children with special needs, and on how all humans learn and grow. She has taught us so much about patience, understanding, and gratitude. We are blessed that she was given to us.

 

Picture 513 Picture 522 Yisrael, 5

Yisrael has autism. He often wants to play with other kids in the park, but when he walks over flapping his hands and making noises, kids tell him to go away or be quiet. They don’t understand that Yisrael is trying to communicate with them in the way he knows how. Shopping with Yisrael is a nightmare. People see a child running away from his parents, grabbing items off shelves, or throwing a temper tantrum and are often quick to offer advice, thinking that they are dealing with a typical two-year-old, not an autistic 5-year-old.

 

IMG_2152 IMG_2013 Zak, 10

Zak doesn’t “look” autistic. I don’t know what autistic looks like, but people have some sort of idea in their heads about what it looks like.  There is an experienced special education teacher who specifically works with autistic children at our church who tells me on a regular basis that Zak isn’t autistic. She says he doesn’t have “that look” and I need to see a new doctor for an accurate diagnosis.  This is just one example of many, including family, friends, church pastors and strangers we meet while we are out and about who just can’t believe he has autism.

He is verbal, although he has a pronounced stutter, and gives good eye contact.  Most people are disappointingly ignorant of the spectrum of autism and how different it “looks” on each child affected by it.  Zak’s autism is expressed in high anxiety, sensitivity to sensory input (light, sound, smells, taste, touch and movement), the inability to be flexible, spontaneous and compromising, and the need to control his environment, among other things.  If any of this goes against his limits, he melts down.

His meltdowns include crying, screaming, making life threatening statements, throwing objects and other forms of aggression. They end with him curled up in the fetal position, shaking and shivering until he finally comes all the way out of it.  And then he is joyous, exhilarated, over-the-top happy;  an odd emotion coming from a very negative attitude most of the time.

We have safety plans in place in the event things get out of control and I need help managing him.  It’s a scary life, especially with younger siblings in the mix.  I don’t need people questioning his diagnosis.  I have dedicated my life to research, doctors, therapy, medication and whatever else could help him grow to be an independent adult.  I need the people in my life to be supportive, encouraging, uplifting and considerate to us.  This isn’t easy.  But God blesses us in our efforts.

 

photo Daniel, 7

Daniel is a high-functioning 7 year old Autistic boy.   He appears to be an “average” child most of the time but if you spend enough time around him, you will notice little quirks or traits that are related to his Autism.   Most people assume his quirks are as a result of being a spoiled child – being allowed to do things that other children do not do. They feel that a simple dose of strict discipline will correct the quirks or unwanted behavior.  Nothing could be further from the truth.

Autistic brains are simply wired differently then the average brain and no amount of discipline will cure or correct the Autism out of him.  Some traits that average children naturally poses,  Daniel and other Autistic children need to be taught.  Take for instance, common sense.  The little angel versus devil on the shoulder that helps a person know when they are doing or about to do something wrong, Daniel does not have.   This has to be taught to him in the form of rules.   What an average child would know and understand, we have to teach and review on a daily basis.

We the parents have to act as that little voice, helping him to understand, not only what the rule is, but why we have it in place.  For example, you have to look both ways before crossing the street because there may be cars coming, you could get hit by the car,  and would get hurt.    This is a rule that took us over a year of working on it, before Daniel started doing it on his own.   Some days, we still need to remind him of this.

We have explained to Daniel that he has Autism and that he thinks differently then others,  but that it isn’t a bad thing.   No two people, no matter what is going on inside their heads, are ever exactly alike.  Even twins that look alike, think differently.  Autism just means that he’s special.   This explanation allows Daniel to understand that he is different but not in a negative way.

Autism has certainly changed my outlook on life.   There is always the saying, “Appreciate the simple things in life”,  but before Daniel, I never really did.   I do now.   The drawings that he does, the times when he comes to us for random kisses and cuddles, the e-mails or text messages he sends from his iPad, and even just his daily achievements, mean so much.   Every day I look at him, remembering the little preemie boy we were all so worried about, and am thankful that he is happy and healthy. Because,  at the end of the day, that’s all we really wish for each one of our children, isn’t it?

 

i0000010_11 IMG_20130701_173444 Peyton, 22 months

My son Peyton is such a happy boy. He smiles and he loves to play with Go Go Smart Wheels just like any other 22 month old. What is hard for others to understand just  by looking at his cute smiling face,  is that there is an incredible mind that doesn’t work the same as other children. Yes,  he looks like other kids,  however he has sensory needs that can’t be seen or understood by the average person.

He likes all kinds of stimulation that looks appropriate now, at 22 months, but when he is doing the same things like spinning bowls at the age of five,  it will look out of place. He likes to roll on the floor for relaxation,  but when he’s in the middle of the mall rolling on the floor,  people look at you like you are the worst mother in the world – “Why can’t she control her child?” Yet, all he is doing is trying to decrease the sounds, lights and other noises from overwhelming his system. Having a sensory disorder is like all your senses being at 100%, all at the same time. We have the ability to manage our senses with our brain but some kids with ASD can’t tune things out like we can.

I found that people treat my kids differently when there is something worn on the outside – like the weighted vest or braces on worn on feet . There is a visible sign that allows them to see that they are different.  It’s hard when you feel that others are thinking that you should “control your child”, when they are only doing what comes naturally to them. I used to tell my mother that I should get t-shirts that says “I have Autism” to make going out in public easier. Yes they both look normal but their minds are different, and that is what is the most beautiful to me – because they think differently and uniquely, this can be a gift when they are molded with love.

 

IMG_20131129_114528 Miranda, 17

Miranda is Peyton’s older sister. My daughter that is 17 now, used to have to wear earphones every day for years just to get through the days without screaming at everyone to stop whistling or tapping their pencil. The noises are painful to her. Miranda is affected so much by sound still today, that it is so hard for her to go into public.

She even has trouble at home with sounds. If she knows the dog is in the house she says she can hear her breathing. She has to go to her room a lot to escape the noise that bothers her. She has poor conversation skills and only communicates well with adults. She doesn’t have any close friends, so she plays the Nintendo DS and other game systems a lot. Miranda also has poor body awareness,  so much so that she  runs into a lot of things. Her gait is one of a rocking style.

People think she is older than she is and expect so much of her. Because at school they have no problems with her, they think she knows how to behave in every situation, but that is not true. At home she is easily agitated and yells a lot when anyone is making noise. She has many other sensory issues that interfere with daily life. She especially doesn’t want to be touched.  Most people think if she is touched lightly that it won’t bother her, but it’s just the opposite. She gets highly agitated and responds inappropriately.

She wants to work in the library when she graduates high school because its quiet. She suffers with social skills and takes everything literally, so I know that will be hard for her. She is so sweet and good-hearted and relies on God as her strength, and that is how she makes it through the day. We send prayer cards with her to school so she can read them when she feels the need. I pray her social skills improve with age so she can live a fulfilled life where people can accept her for who she is and not by what they thinks she is because of her diagnosis.

 

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Eli, 8

Eli is our first child.  He has been such a blessing in our lives.  He is loving, affectionate, smart, funny and a joy to be with.  He doesn’t look autistic… until he does.  He will flap his arms, jump up and down and wring his hands when he’s excited or happy. Instead of calmly dealing with disappointment internally or rationally his first reaction may be to scream and cry.

He developed so close to normal development that he didn’t get diagnosed with ASD until this year.  He’s been in speech therapy and has difficulty understanding language. He also has had a difficult time learning to read and write but since turning to homeschooling, he is really starting to catch up.  School was a place where he had to deal with pressure to control his stimming and perform at a level that wasn’t possible for him –  this caused an intense amount of anxiety for him.

My first recognition of Autism were of children more significantly affected.  The child who seems to be hard of hearing, the child with constant stimming, the child with tantrums who could not bear to be touched.  That wasn’t my son, and so for years I dismissed the possibility of his ASD.  My son loves to cuddle, in fact he craves touch.  He likes to find himself a small quiet spot to desensitize when he’s experiencing overload, like a cabinet, under a bench or under the slide at the playground. While some of his development was normal, like learning to walk and potty training,  other development took time and therapy like learning to ride a bike, learning to swing, learning to write and even learning to sit at a desk for more than 5 minutes.

He’s in many ways a typical little boy –  he loves paying with friends, he loves video games and Legos.  He’s just unique, as the director of his preschool used to say, and quirky as his speech therapist puts it.  We’ve seen lots of development in the past three years that makes us hopeful for his future. We have let Eli know about his super power and he is proud that he is part of a special group of people who experience the world differently.

When we were going in for diagnosis a friend of mine said, “Oh you are so lucky to have a child that others can’t see his disability, they won’t judge him before they meet him.”  While her statement might be true, it saddens me to know he will still be judged by people who don’t understand how to accept unique and quirky as positive pieces of the puzzle of life and relationships. I’d love to spare him that criticism in life, but instead I will teach him to be confident in who he is, to love with abandon and never stop being who he was created to be. Autism is a neurological disorder, it happens in the brain and can affect the entire body in different ways. I’d love to see people stop responding to this diagnosis as a pitiful fate for children. Different doesn’t mean less –  in our case different means blessed.

**If you would like to share your child’s story on this blog, please contact autismfamilyfriendshipgroup@gmail.com

What IS Sensory Processing Disorder, Anyway?

I’ve heard this asked many, many times. Or, when explaining some of my son’s sensitivities, people will say, “Well my son gets scared in loud washrooms, does he have SPD?” Or, another statement is, “Well all children love to spin in circles, that doesn’t mean they have a disorder.” Few people have a true understanding of what sensory processing disorder is.

In medical terms, SPD is defined as, “A neurological disorder in which the neurological process known as multi-sensory integration fails to properly organize input coming from multiple modalities, such as proprioception, vision, auditory system, tactile, olfactory, gustatory and vestibular system.” A “dummies” version of that definition could read, “Sensory processing disorder is a condition in which the brain has trouble receiving and responding to information that comes in through the senses.”

But even that simpler definition does not really give an indication as to what sensory processing disorder looks like, or how it affects children with it. So, prompted by a great post on a homeschooling board I’m on, I’m going to give you an inside view into Sensory Processing Disorder. You do have to remember that SPD affects everyone differently – children can be over sensitive or under sensitive. They can have difficulties in just one or two areas, or in several areas. Like many spectrum disorders, children with SPD may be affected mildly or severely. My son is middle of the road. He’s not severe, but he is not mild either, he has some significant difficulties in areas.

So, let’s start. One of the comments on the board I’m on was this, “It seems to me like such a general term… everything we do includes using our senses, so for someone like me who doesn’t regularly work with kids who have special needs I wouldn’t know where to begin!”  And she nailed it – it being the difference between a neuro-typical person, and a person with SPD.  She’s right, we are bombarded with sensory input all the time, and for “normal” (or better put, neuro-typical) people, that input is enough, and our body is able to regulate it. We have to have input from seven specific senses in order to be in controlled regulation: auditory, visual, tactile, taste, smell, vestibular and proprioceptive. We receive this input from our daily environment, and then our brain sorts and organizes and modulates it. For most of us, we never have to think about this because our brain does it perfectly.

But for a child with sensory processing disorder (or a child with other neurological disorders,  since they often have sensory issues) it’s not that simple. If a child is over-responsive to input, it typically creates a fight or flight response, as they try to avoid that sensory experience. If a child is under-responsive to input, they will naturally crave it, and this leads to what is called “seeking” behavior. Take my son, for example:  He is under-responsive to proprioceptive and vestibular input. Proprioceptive input is input from your joints, muscles etc… It helps you sense pressure, where your body is, and helps in fine/gross motor activities. Vestibular input comes from your inner ear and is your sense of movement and balance.

So in a normal day, our general activities of sitting, writing, walking, going up stairs, really any movement that we do, is enough proprioceptive input and our body can regulate it. However my son’s brain doesn’t register the input normally, it doesn’t realize  the input it’s getting. Since this input is necessary in order to feel calm and regulated (proprioceptive input is huge in calming oneself, so this is a hard input to have out of whack), this in turn leads to what is called “proprioceptive-seeking” behaviour, in order obtain that input.

So, for proprioceptive input Thomas will seek out bumping, jumping and crashing activities (he literally throws himself onto the floor), he stomps when he walks, he has to be buried under about 15 lbs of blankets, and I’m not exaggerating that – he has a weighted blanket that weighs 6 lbs, and then he has roughly 10 more lbs of heavy blankets on top of that. He likes having hoods over him, he likes bear hugs, squeezing himself into small spaces, roughhousing to the point that he doesn’t realize he might be hurting himself, others, or that he’s invading personal space. It’s nothing for us to be sitting and have Thomas literally come do a flying tackle on us. Not because he’s being bad, but because he needs that input.

For vestibular input, he can look like an ADHD child: he’s constantly in motion whether it’s shaking a leg when he’s sitting, fidgeting, or jumping, climbing, spinning and running. Instead of walking normally, he’s often jumping, running and hopping. He loves being upside down. Where the line between a normal active child and a child with SPD is drawn, is that a normal child knows when their behavior is appropriate, and can generally control it. Children with SPD can’t, or struggle to, because it’s a neurological need.

Now, the opposite of under-responsive to vestibular input,  is my daughter – she is over-responsive to vestibular input. While she can handle spinning, she gets upset with up/down movement. She gets upset if you try and tip her over, she doesn’t like being high up in the air, and those little “whoopee” hills you go over in cars, often leave her screaming and crying. She will physically cover her ears and complain of pain.

Some children’s problems stop here. They have difficulty registering input, they seek it, receive it and then they’re fine. Thomas however, also has modulation problems, so once he gets the input, his brain doesn’t know how to modulate it into control. What this leads to is a child who’s gotten too much input, and then is out of control – basically running wild without any thought for safety of himself or others. An example is one day he got out of of control and ran through the bedroom into the living room to use the couch as a springboard and did a front flip off of it – into the window. Thank God it didn’t break. The window was right there, he knew that. He knows he’s not allowed to do that – however, once he gets into that zone, all reasoning, all thought of safety,  is gone. And, once he gets into that zone, he normally can’t get out of it without a complete meltdown. Transitioning when he’s in this zone is a huge struggle.

So, our job as his parents is to give him controlled input – give him activities to give him the input he needs, but recognize his limits (because he can’t recognize them himself). When we see signs that he’s nearing that line, we stop and give him deep pressure (proprioceptive) input, to calm him down. Simply put, vestibular input revs children up, proprioceptive input calms them down.   Also, we find ways of helping him in places where he has to sit relatively still – we use a fit cushion in church and let him sit on that – that way he’s getting the movement input he needs, but he’s still sitting. We give him fidgets to play with. He also wears a weighted vest to church, and the weight helps calm him.

Then you have the other end of things – children who are over-responsive. Thomas is over-responsive to auditory, tactile and visual input. So again, you and I can go through our day being bombarded with these inputs and our brain receives and regulates them, perfectly.  A great example: we hear a song that’s too loud, and it bothers us, so we automatically know to turn it down. It’s not pleasant, but we know how to remedy the situation without feeling scared or out of control.

However, for children with SPD who are sensitive to auditory input, instead of that loud music being annoying, it can be downright physically painful to them, or it terrifies them. Their reaction is fight or flight. They might scream, have a meltdown, cry, cover their ears and run, shake etc… While logically yes, they should know to turn down the music, or to even say that the music bothers them – they can’t.

Take my daughter with ASD – she has auditory sensitivity. A song came on the stereo the other day and for some reason it was really loud. Instead of saying, “That’s too loud!” like a normal child her age would, she clamped her hands over her ears, and fell to the floor curled up into a ball, shaking and whimpering.  Another example of auditory sensitivity:  my son never used to be able to go into public washrooms, they terrified him. And they scare lots of “normal” children. However, the difference? If I even tried to get my son to go into a public washroom, he would throw a kicking, screaming meltdown, or he would run away – with no regard to traffic, danger etc… His fear was so bad, that at times, he peed his pants, rather than go in a loud washroom.

Another effect of his auditory sensitivity, is that auditory input can overwhelm him, and he just tunes it out. Thus, trying to tell him something via auditory means doesn’t normally work well. He tunes it out, or it upsets him. So we use visual cues: a visual timer, so he can SEE his limits. A visual schedule so he can see what’s happening next.  He also struggles with regulating his volume, our day is constantly filled with reminders of, “Indoor voice, Thomas!” His OT has told us this is often a coping mechanism for children with auditory sensitivity, they use the sound of their own voice, to block out the sounds in the background that are bothering them.

For tactile, our son is very sensitive to the feel and temperature of food. He cannot swallow certain textures – just flat out can’t. We have to finely chop most of his meats or else he can’t eat them, and even then it can be a struggle. He has food anxiety from this – trying to get him to try a new food often results in shaking, crying, fighting, or sometimes running and hiding.  He’s sensitive to certain textures – he has real struggles wearing socks, they have to be inside out, and even then sometimes, trying to get a sock on him results in screaming fits. For a long time he couldn’t wear jeans. He cannot handle anything slimy or sticky on his hands. He loses it until he can get them washed off.

An example, the other day in the car he ate an apple. It left his hand sticky. He was upset about it, but was doing “okay”. However, the full extent of his upset became evident when we got home. Normally he unbuckles himself and gets himself out of the car. So I got his sister out of her carseat and went to the house to unlock the door, assuming he was coming. I started in the porch when I could hear him screaming and crying in the car – he couldn’t unbuckle himself, because of the sticky on his hands.

Water is another big one. We have had him in swim therapy for a year now. He had huge issues with the tactile feel of water. We went almost 6 months without him having a bath (we had to sponge bathe him and slowly work up to getting him back in the tub) because of his sensitivities. It’s taken us almost another year, to get him to where we can wash his hair without him melting down – as it is, we only wash his hair once a week, because it’s still an anxiety for him.

His visual sensitivities are the most mild. He can be sensitive to lights. Now, this is getting better, but for a long time lights really hurt his eyes. For example, if sun came in the car when we were driving he would scream and cry. The biggest challenge for Thomas is that he can get overwhelmed visually. A big area this comes into play is cleaning up messes. Heaven knows, he can make a mess! But, the problem is in cleaning it up. Visual clutter overwhelms him, and he has an additional modulation difficulty, that affects how visual input affects his emotional and behavioral responses.  He can take a book off the shelf, but truly struggles putting it back, because the sight of the line/rows of books overwhelms him. This can turn into crying, anger, and frustrated cries of,  “I can’t do it! I don’t know how!”

Now, there’s a saying out there among the SPD community and it goes like this: “The only thing consistent about SPD, is it’s inconsistencies!”  This plays out in two ways. For starters, sensitivities can come and go. They can have up and down days – some days their sensitivites may not be too bad, and other days you wonder where this sensory-sensitive monster came from. Some sensitivities may go away, and new ones take their place. Also, it is possible to be over and under-responsive in the same sensory category.

For example, my daughter is also over-sensitive to tactile input, especially with regards to anything to do with her hair/head. She also has issues with physical touch – light touch bothers her. Trying to wipe her face, nose, hands, or diaper area can leave her crying and/or screaming, as she frantically tries to brush off the feel of your touch. And yet, she is under-responsive to oral tactile input. She has what they call “oral-seeking” tendencies, which is largely in part due to her feeding tube days. She grinds her teeth, she likes to bite things (it’s not uncommon to see her biting the counter, the table, toys etc…), she loves to eat things with very dry textures like flour. She will quite literally eat spoonfuls of dry flour. We have to be careful because she will try to “eat” things that aren’t safe (her past repertoire includes crayons, paper, dishwasher detergent pucks, hand sanitizer, ashes etc…)

 
These are just some samples of how Sensory Processing Disorder plays out in our home. This is by no means a full list of the ways that SPD affects our children. There is so much to Sensory Processing, people don’t realize it. SPD can be a real physical and emotional struggle for the child and caregiver. Sensory Processing Disorder can also often cause children to have other issues like low muscle tone, learning difficulties, fine and gross motor delays or disorders, low self-esteem and more.

SPD is like many other disorders in that there are no tell-tale physical signs,  the child looks normal, and in most cases even appears to act normal to outsiders. SPD is one of those “behind the scenes” disorders. In the end, the parent’s role is:

1. With under-responsive issues, to give the input the child needs, in a safe way. When there are additional modulation issues, this input needs to given in a controlled manner.

2. With over-responsive issues, the goal is to expose the child to their sensitivities in a safe, non-threatening way, so as to gradually help them decrease their sensitivities. It is amazing the progress my son has made after a year of OT therapy, swim therapy and us working with him at home.

There are many therapy options out there to help children with SPD, including brushing therapy (which we are starting with both children), ABA therapy, Floor Time therapy, music therapy, listening therapy, visual therapy, water/swim therapy, equine therapy and others. Professional therapy may include the areas of occupational, physical and speech. Our son sees both an occupational and physical therapist.

3. Lastly, because children with SPD often feel fearful and anxious, it’s important to create a controlled/structured environment, so they don’t have to live in fear. They find security in knowing what’s coming next and what to expect. Part of this structure can include a sensory diet, which is a set regime of specific sensory input you use at different times of the day, to help your child maintain regulation.

So, I hope that I have given you a somewhat better understanding of what SPD can involve and look like.

Ideas for Living in a Sensational World

My children have different areas of sensory dysfunction. My son, 6, has full-blown Sensory Processing Disorder, and has problems with the areas of auditory, tactile, mild visual, vestibular, and proprioceptive input, as well as some modulation issues. The difficulties in modulating his sensory input creates a boy that very much resembles a child with ADHD at times, and who reacts emotionally to sensory overload.

Our daughter also has some sensory issues, though we believe them to be secondary to her ASD. She struggles with tactile, auditory, vestibular and oral input (she is very under-responsive to oral input, and therefore is an oral seeker). While the children share some of the difficulties, they affect them differently. For example, my son is  under-responsive to vestibular input, whereas my daughter is over-responsive. Whereas my son responds positively to deep-pressure therapy, my daughter despises it. I once read, “The only thing consistent about Sensory Processing Disorder, is the inconsistency,” and I would agree whole-heartedly with this.

It wasn’t until I started brainstorming for this blog entry, that I realized just how many sensory tools we have in this home! All purchased or made with the aim of making life easier for our two children, and in return, for the whole family. I’m very thankful that I am a resourceful and crafty person by nature, which  has certainly saved us money, and allowed us to have tools that others may not be able to afford. I wanted to share some of the products we use in our home, various tools of varying types, as well as some of my “go-to” links for all things sensory.

Our son’s sensory problems affect him the worst out of the two children, mostly due to his modulation difficulties. As I already mentioned he responds very positively to deep pressure therapy, so this is the biggest area of therapy we focus on for him, and this is also the therapy where there’s the largest selection of options. I will never be able to list all the products and/or activities available, because there is so much out there. I highly recommend using Google and searching for Sensory Activities, Deep-Pressure Activities, Sensory Bins etc… You can find a wealth of information. However, I will list the products and some of the ideas that we specifically have/do in our home:

Weighted blankets, vests and lap pads. I can’t say enough positive about weighted products. We have a weighted lap pad, a weighted vest and a weighted blanket for our son (and soon to have a weighed blanket and lap pad for our daughter as well). I made the lap pad and the blanket myself by ordering poly pellets from Quality Poly Pellets and just following online tutorials. My son loves birds, and his favorite is the Scarlet Macaw, so I was able to find some tropical bird fabric online, and I created my own template for his lap pad. We use the blanket around the home – he always has it at bedtime which helps him fall asleep, and we also use it during meltdowns when he needs to calm down. The lap pad we use sometimes during school lessons or if he’s watching tv and just needs a little calming,  or he’ll take it in the car with him when traveling.

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For the weighted vest, I had it made by Natural Remedies, an eBay store. I found that her vests were the most inconspicuous. We purchased some snowboarding fabric for the interior of the vest, for our Shaun White wannabe. Our son loves his vest, and finds it extremely comforting. We typically use this when we’re going places like church, a theme park, shopping – anytime we might be someplace that can be overwhelming for him.

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We did have to remove the four weight packs that were along the very back of the vest, as they were too “lumpy” for my son’s liking. It’s amazing how fast this vest can calm him down.  We would also like to look into a weighted teddy bear for him, and I may get him to choose one out of our (overflowing) bin that we have, and I’ll insert some weights into it. I’ve been told they can be comforting for children to hold onto, especially during times that they may be scared (like at a doctor’s office).

Sensory Bean Bags. I am in the process of making these using poly pellets, and I know they’re going to be a favorite tool in this house. Bean bags are a great tool for heavy work (which is calming, helpful with proprioceptive sensory input). You can toss them back and forth, do balancing games where they have to carry them on their head, crab walk carrying them on their belly, and do mid-line activities where you have your child throw the bean bags at targets that are on the opposite side of their body (ie. hold a bean bag in the right hand, have them cross their body and throw it at a target to the left of them). The bean bags that I am making will be made out of several different fabrics: fleece, cotton, satin, corduroy etc… so as to provide different tactile input at the same time.  Being a homeschooling mother, I plan on going a step further and appliqueing the numbers 1-10 on each side of the bean bags, so they can be doubled up for math games.

Sit n Gym balls & Trampolines. We have a ball for both of the children, one with a handle for hopping, and one with feet. My son’s has the feet so that he can sit on it while doing lessons on those days where he just needs a little extra input to help him stay focused. These are also great for proprioceptive play time, as any bouncing activity gives great input, and can really help the child focus themselves when done in a controlled manner (ie. Say to the child, “Bounce 10 times,” instead of letting them go crazy with it). Trampolines are also an excellent tool to have on hand. We have an 8′ one for the back yard, and are in the process of purchasing a small 3′ one to have indoors as well, for the winter months.

Seat/Balance discs.   Again, we have one of these for each of the children.  We use them during times when we need them to be focused, or calm/quiet, they normally go with us to Mass, and then I also use them sometimes for my son during his lessons. However, these can also be used as balance discs, which is great for vestibular input. Most of the discs come with a side covered in bumps, which gives you the added bonus of having tactile input, too.

Fidgets. We have a few different fidgets in our house: Tangles, Bendeez, pencil fidgets, and an Inside-Out ball. Fidgets are great for different inputs depending on the fidget, but for our son it’s normally about tactile and proprioceptive input, helping to calm him during times he needs to focus. Again, this might be used during Mass, during lessons, or even during times when we’re just trying to get him to calm down a bit, but recognize he still needs a bit of input.

Balance Beam. My husband is in the process of building my son a balance beam to use at home, to replace the one we have on loan from his PT. The balance beam is great for vestibular input, and we use it mostly for sensory play.

Those are the products we have. On top of those I try and do sensory bins with the kids, using different bases, anything from rice, poly pellets, beans, shredded paper, cut up bits of rafia, water beads etc… The children both love sensory bins. I would like to slowly work my way up to stickier things like GAK or a sticky play-dough, as my son is extremely sensitive about anything sticky on his hands.  We work many of these tools into my son’s sensory diet. For us, our sensory diet at home is not necessarily a scheduled “Do a vestibular activity at 1:00 pm”, as much as just learning what he needs, when. We know that if we need him to focus, then we need to do a Heavy Work activity, which is normally a proprioceptive activity. We know that he needs structured active input during the day, or else he will enter his seeking mode, and once he enters that, it normally ends in tears. So, we make sure we give him time throughout the day to have active input, which normally consists of vestibular activity.

We keep a printed chart on our fridge that is broken down into three columns, each with the header of a different type of input and when to use it. Then, under each column we list activities we can do. Since we require our children to do chores around the house, I try and choose chores for them that can double as sensory input. This is the chart that we have, which is by no means a complete list of all the sensory activities you can do, but our favorites in this house:

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One of the biggest things that has made a difference in our lives, is the implementation of a visual timer, and also a visual schedule.  As are many children with SPD, my son and daughter both are extremely visual, they do not register auditory input very well. We were really struggling with transitions for our son, so his OT recommended we use a visual timer. We bought this one from Learning Resources. I have to say it really did make transitions easier, when he could see that the time was nearing, and then up.

His OT also recommended a visual schedule. She put it this way: when you have Sensory Processing Disorder, you are constantly bombarded by overwhelming sensory input. They often live in fight or flight mode. So to add constant confusion about what’s happening next, not knowing what to expect, can be a very scary, overwhelming feeling for the child. Having a routine/schedule, knowing what to expect is comforting to them. After having bought ours and putting it into use, I would agree. Our son especially really does better when he can see what is going to happen during the day. We purchased this schedule from schKIDules, and love it. We do vertical columns instead of horizontal, for morning, afternoon and evening. It helps keep all of us on track. We also have a sequence strip just for his school time, so he knows what’s coming next.

Again, in our home we have just touched the surface of what you can buy and do, to help your children with their sensory needs. I drool my way through therapy catalogs, the way children do through the Sears Christmas Wish book.  My favorite website of all for purchasing tools is Therapro. They have I think the largest selection and best prices. There are many products I would love to have for our home one day. Heck, I’d love to have an entire sensory room someday! But, until that winning lotto ticket comes in…

Lastly, there are many books you can get. The Out of Sync Child, and The Out of Sync Child Has Fun, are perhaps the two most highly recommended books there are. I own and love The Everything Parent’s Guide to Sensory Integration Disorder. And while I haven’t read it yet, I did recently order The Child With Special Needs: Encouraging Intellectual and Emotional Growth. While designed more perhaps for children with ASD, it is supposed to be useful for children with varying disorders, and I think it will come in handy for SPD as well. It also talks a lot about the “Floor Time” approach (which you can Google).

Anyways, hopefully, I’ve given you a few ideas on things you can buy or make to help your child, and given you a few ideas on ways to use them, and activities you can do!

Accepting the Label

We have been struggling lately with our daughter’s emotional behavior. In typical ASD fashion (and to an extent, in typical 3 year old fashion), our daughter cannot verbalize emotions at all. Even though she is highly verbal,  you will never hear the words, “I feel happy, I’m sad, I’m mad, I’m angry”, come out of her mouth. She knows what the emotions are, and she visually recognizes the facial expression of them, but she seems to struggle with communication of those feelings, when it applies to herself. For example, say she’s upset, and you ask her, “Ashley, do you feel mad?” She will instantly hide her face, and scream, “I not!” (despite the fact that her red, tear-streaked face and screaming voice tell you otherwise). To associate that feeling with herself overwhelms her.

Our daughter has a volatile temper, with very little frustration tolerance. She gets angry very quickly, and is just incapable of handling her anger with anything but physical aggression and screaming. Her verbal skills become non-existent when she’s angry. While we deal with this on a daily basis in our house, lately it has been getting worse. She has been increasingly aggressive, especially with myself and her brother, and is now starting to add biting to her arsenal of hitting and kicking.

An example of her reactions would be along the lines of this: the other day her brother did something to annoy her. Nothing major. However, it upset her enough that she took a kitchen chair that was nearby and cracked him on the head with it, hard enough to bruise him. This earned her a timeout. When the timeout was over, and she was starting to calm down, I tried to talk to her about her behavior. I crouched down, made her look me in the eye, and asked her, “Ashley, is hitting bad?” She nodded her head yes. “Ashley, did you hit Thomas?” She nodded her head yes. I  continued, “I know you’re mad,” and at this she started hiding her face, but I continued on, “But Sweetie, hitting Thomas was bad behavior.” For this I was rewarded by screaming and a crack over the head with her doll. This is just but one small example of how she struggles to handle her emotions and emotional behaviors.

That night, the program director for her ABA therapy called for her monthly check in. I talked to her about the new biting, the increasing aggression, the continuing problems with frustration and anger tolerance, the inability to handle emotions, the extreme need for things to go her way, our frustration of how despite repeated talking-tos and discipline, we just can’t seem to get through to her.

During our talk I realized I was guilty of something which is going to sound odd – I was guilty of thinking of her as “normal”. Our daughter is very high-functioning; while she still lags somewhat in her receptive language skills, she has otherwise excellent verbal skills, and after five months in the ABA program she has made truly unbelievable strides in her abilities. She has turned into a social butterfly who seeks out other children, who is now engaging us, who is becoming increasingly physically affectionate, and who is turning out to have a hilarious imagination! It is extremely easy to look at her and think of her as wholly normal, ourselves included. And in today’s anti-label society, this would be considered a very good thing.

Except. Except she’s still not wholly normal. As her father, myself and her therapist, being the only ones to deal with her on a daily basis, know, she still has several areas of struggle. She has the extreme controlling tendencies of Asperger’s – Ashley’s life is lived on the terms of “My Way or the Highway”. While improving, she still struggles asking for help at times, which when combined with her low frustration tolerance, can often end in aggression and screaming. She is overly independent, to the point of being unsafe (like grabbing steak knives to try and cut open her new doll, instead of asking us for help). Often times when she is trying to ask, she will not use words, and instead will point, or tug on you. Despite repeated warnings, discipline and punishments, she still struggles to grasp the concept of danger which means she is constantly trying to touch or grab  things that are hot or sharp, or she runs away in areas with traffic. She takes risks in her play that other children her age would never dare to. She has a very high pain tolerance, which of course only contributes to her lack of fear. She also struggles to control her obsession to get into things she’s not allowed to have, again despite repeated discipline etc… As already mentioned, she struggles with talking about her feelings, and she really struggles with apologizing – it seems to be a very overwhelming thing for her.

While improving, she still has sensory sensitivities. She is especially orally seeking, and will eat odd things  like flour and baking soda, she is obsessed with eating butter. She will try just about anything – which over the last couple years has included dishwasher detergent and anti-bacterial hand cream. She likes to bite the table at times. She can get stuck on repeating words (like the morning at Mass where she repeated the phrase ‘Upside-down!’ in a little sing-song chant over and over the entire time we were there), she still can “shut down” in overwhelming social situations, meaning she will not look at anybody, make eye contact or talk – even to us.  While she handles routine change very well, she does not handle physical change as well, especially with regards to her clothes. New outfits tend to upset her for some reason, and we normally have to show her new clothes a few times before she will allow us to put them on her. She does have a “stimming” behavior that she does (typically a finger flicking), and sometimes in that stimming there is a routine that she has to do (like one day with her baby doll, she would rub her hair three times, then touch the doll’s face to her nose, then repeat); however, hers is so subtle that I doubt anyone but myself or those around her frequently would ever notice.

And so, with that, I realized that I had been treating her as normal, I had been disciplining her as normal, and I had been placing normal expectations on her. How I handled her tantrum that day, is how I would have handled any other child’s tantrum, and I was wrong to do that. Oh, don’t get me wrong, she had to be disciplined for the aggression she displayed towards her brother and I – no question about that, and I was right to put her in time-out.  However, I should have handled things differently after the time-out was over. I should have taken her emotional communication limitations into consideration. My talk with her therapist also helped me realize that in treating her as “normal”, we were making things harder for her. We know that she has real limitations in her capacity for expression, understanding, communication and self-control, and yet, we were doing nothing to make it easier for her around the house.

Her therapist had urged us in the past to start using visual aids around the home to set limitations, with the goal of reducing some of the power struggles and the constant obsession to get into things that are off-limits. This would in turn likely help reduce the number of tantrums and meltdowns we have. And yet – we hadn’t done it. Why? Because I looked at her as normal.  Visual aids (or PECS) just didn’t seem like they were for “my” child – after all, she is extremely verbal. Her therapist pointed out that despite her abilities, auditory input can be a struggle for her, but that she excels with visual cues. For us to constantly say, “No, Ashley,” or to place auditory limitations (“Just two, Ashley!”) really means nothing to her, hence why she seems to ignore us. And of course, one thing leads to another which culminates in frustration and anger for both us of. But for her to see “NO!” or for her to visually see a limit, has a completely different effect.

By not accepting or acknowledging her limitations, we’ve been making life harder for not only her, but for our entire family. She also recommended using visual cues for controlling her anger. She said the biggest thing is to catch her before she hits her explosion state, to try and give her calm-down remedies before she loses control. However, on those times she does lose it, for us to also give her visual options of  acceptable ways to release her angry energy, instead of hitting, biting, kicking, screaming etc…

So, that night, I got to work. I went online and searched for visual aides for the strategies she mentioned. In my searching I stumbled across “Zones of Regulation.” It’s a fairly simple design, working on a stop-light system. Green means “Good-to-Go!”, your child is calm, happy, is listening, displaying appropriate behavior. Yellow is “Slow Down” zone. This is where you want to catch your child – when they’re starting to get frustrated, too excited or silly, too loud, feeling sad etc… And the red “Stop!” zone is very self-explanatory. Your child has lost control and is angry, out of control, yelling and/or aggressive.  Beside each of the colors, you display visual cues of how the child is feeling, and then beside these, you place visual cues that show ways to calm themselves down.

The idea is that when we see our daughter (though this will work well with our son, too) is  entering the yellow or red zone, we will bring her to the chart  and show her what zone she is in. Our bigger hope is that she’ll be able to communicate her feelings by pointing to the emotion on the chart. We’ll then let her pick out an appropriate way of helping her release her anger or of calming herself down. Using this we will be not only enabling her to share her emotions in a way that’s not overwhelming to her, but we will both be able to maintain control – she will have control over her choices while I/we will have the control in making sure that her responses do not become aggressive.

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I realized that the color system could work really well in other areas, too, so I used it for our other around-the-house visuals. We created green “Okay!’ labels for things that she is allowed to get for herself (she has a shelf in the fridge that she is allowed to pick a treat from), yellow “Ask First” labels for things that she has to come to us and ask before taking, and red “No!” labels, for things that she is not allowed to have or get into. We made sure to include her in the process of putting the labels up around the house.

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The system is new. Time will tell how it works, I know it will take time to teach her the color meanings, something that will be continually worked on by ourselves and her therapist, however, so far the results are encouraging. Within two hours of being put up, we had a chance to put the system to the test, and it passed! She was able to point out to us that she was feeling scared, and when we remedied the situation, she pointed to show us that she was happy.

We have taken a step to accept that aspects of our daughter are not normal and we are acknowledging that she does have special needs. To deny a child’s special needs does not help them – it only hinders them. There are extremes of course. There are parents who go so far with the “Special Needs” label mentality, that they never try to teach their child how to work towards their potential. They do everything for them, “baby”-proofing every aspect of their lives, and in those instances the label does become a hindrance.

However, that is not our goal. Our goal is to help our daughter learn the skills necessary to appropriately express her emotions, how to control her behavior, and how to recognize and respect limits. I especially like how a fellow ASD Mom put it on an online forum thread: “I try to think [that] my job as their mother, is to help them overcome the struggles presented by living with an atypical brain in a typical world. Hopefully my [children] will be able to transcend some of the veil that their non-normal brains present, so they can be happy and successful in a world that is not made for them.”  No matter how severe your child’s disability is, or how minor – anytime a child faces a challenge, the goal that this mother shared, is our common goal.