The World We Know

“ All the flowers in the meadow appear the same. But each one up close holds something special”

         Willow lived in a world of beauty. A beauty many in her life could not see.

Willow would be awoken in the morning before the sun would rise. She saw the awe of the stars and the moon in the sky with a slight glistening and twinkle. She would watch the stars and moon fade as the sun would wake.

She would stare at the sky for hours unaware of all that happened around her. Captivated by the beauty and wonder of the world she knew.

As Willow ate her breakfast, which she looked forward to every morning; her toast cut into 4 perfect triangles and toasted just the way she liked it. She would admire each triangle then take a slow savory bite as she felt the warm yet rough sensation of the toast on her tongue.

Following her breakfast Willow would change from her jammies into something sparkly and pink! Her, her mother and brothers would walk her oldest brother to school.  She would sit in the stroller alongside her baby brother. She would admire the early sky and dewy flowers in the white meadow they crossed each morning.

However, sometimes she would hear a startling noise like a cars horn, or feel a large bump at they strolled along the path. These things often made Willow hold her ears to feel safe, until she saw the beauty of the sky and meadow once more.

Willow would often see the beauty in the world, but much differently than her family saw it, and she would let it take her away into a world where she felt safe and calm.  She especially loved when she was joined by the happy sound of soft music, or the sweet smell of something yummy.

Every day when her daddy would come home from work, she would sit back and watch as he kissed her mummy hello, and hugged and kissed her brothers. He would then come to Willow, who was laying on the floor, and lay down beside her to give her a gentle kiss on the cheek and smile softly as he said “Hello My Girl”. She adored her daddy and always felt safe with him. She loved those moments and the simplicity of her world.

                You see for some, the world is a big and scary place. Sounds like a fire engines sirens can hurt Willow’s ears. The brightness of the sun can hurt Willow’s eyes. The moving of life around her or rustling of a plastic bag can make her chest feel hot and scared. Perhaps, this is why she wakes before the sun rises. She enjoys the calm and quiet. The soft glow from the moon and stars she finds soothing.

Maybe we could all learn to see bits of the world through Willow’s eyes.

 

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Building Blocks of Life with Autism

The last few months have been a real learning curve for us. We hired out daughters team and our daily life of “family” has been extended. We typically have at least one person in our home working with her daily. Teaching her things like turn taking, skills and development of different skill like hand grasps, walking up the stairs, or down (something we have been working on for 2 yrs!). And things we consider simple like drawing circles, or lines, or stacking/building blocks. We also work on outings with her BI’s in tow.

She has 3 amazing Behaviour Interventionists/Therapists (BI’s). A (new) fantastic Behavioural Consultant (I won’t go into the learning experience from our first BC), an Occupational Therapist (OT), and she’s on the wait list for speech therapy and physical therapy. We are also looking to hire a musical therapist as well. This clearly does not include her many other professional specialists but her “full team” is likely into at least 25 members. Looking at the big picture it’s encouraging that she has so many looking out for her.

Now to explain my title “Building Blocks of Life..”

Autism is a HUGE learning curve. I find society often assumes that people that are differently abled are suppose to conform to how WE do things in OUR world. But that is a misconception. WE need to meet them where they are at…even if it means breaking into their world even if only for a few moments. The terms “Change is good for them” does not apply to my daughter…she has a very hard, nearly impossible time with change. It takes endless hours of frontloading (speaking of what we are going to do before we do it Eg “We are going to put on our shoes to go outside, then get in the car and drive away”, sometimes even therapy, and the most necessary of all PATIENCE. Not just from us, but everyone involved…us being her parents, her siblings, her therapists, her team. I want to try to break down a few struggles she has. I must make note that when I say “Building Blocks of Autism” this is MY OWN interpretation for my daughter. Each parent has different building blocks because no two people with autism are the same.

5 BUILDING BLOCKS OF AUTISM (or things to think about 🙂 )

  1. Sleep has always been a downhill battle…I can’t tell you how little sleep we function on. Currently her OT is trying to assist us with a better sleep environment. We are thinking of bringing in some fibre optics for visualization and calm, a giant bean bag (yogibo) to sit under the fibre optic structure, a new bed where she feels more closed in and secure and a few other things. We hope and pray this will aide her sleep. She’s still little for her age and needs a lot more sleep than she is getting. So SLEEP is a building block of autism.

2. Eating is another struggle for her. Not only is she very selective with texture and brand specific, but it also takes her quite a while to eat. Dinner for example typically takes her 2 hours to eat due to slow oral motor skill (Eg Chewing in centre not knowing to move around side to side like most typically do automatically). How are we trying to aide her with this? Blowing bubbles from wands, practicing blowing through a straw, pursing lips around whistles to blow the whistle or party horn. Another building block of autism.

3. Exposure to society has always been a struggle. Even before we knew about her having autism. Since she was a baby we would go out anywhere and she would fuss, scream and cry. Then later that night her sundowning routine would take hours and her sleep often interrupted. We would go to family or friends houses, and she would cry, fuss, was restless. Going to the mall typically resulted in screaming, going to the park typically resulted in running off or “bolting”. Going out with her is always stressful…i’m sad to say. Finding out she had autism was enlightening in the sense that many things made sense of why she has always struggled with certain areas. This is one area we are still trying to break through, so this is still a building block as we haven’t been able to “build” just yet. We expose her as much as we can to experiences and environments but within reason. Going out daily is not an option…two, maybe 3 times a week sometimes but usually this means no sleep for a week.

4.Relationships with Family and Friends…I bring this up often because it’s a true struggle. We fear they think we don’t want to spend time with them because going to their houses really is unlikely an option for us. We LOVE seeing and spending time with loved ones but in order for our family to see most it usually involves them coming here. It blows my mind how some things we just make excuses or don’t want to see them, possibly them seeing past the fact that we would love for them to come here and offer opportunities. But we can’t control how they feel, we can only do our part and our part is opening our door to loved ones, sending the occasional text that we love them (would love to daily but often we are preoccupied with our daily interventions of life). So family is a building block. And it’s crucial for them to be in her life (who would want to miss out?). We continue to strive to help our family see that some things may not change and this is how it needs to be, at least for now. We are so grateful to our parents, aunts and uncles and cousins who either “get it” or attempt to try to understand. Not to mention our circle of friends. This is also crucial to a good support system. So please be there for your family. Yes we all have our struggles but we would be lying if some didn’t have more than others. So if you know a family facing struggles at any time as well as constantly, what’s the harm in just being a listening ear, a shoulder to (gasp!) cry on, or a presence to stop by for a visit even if it’s quick? There is no harm. Only benefit.

5.Stop trying to help others understand who aren’t open to understanding. This is like pushing a brick wall. And a hard lesson we had to learn. I adore my family, and I have tried to help others understand but some just won’t listen. It’s painful but again you cannot change how someone thinks or feels. Your part is to do what you can to try and if you get no where eventually you just stop. You need that energy for YOUR family and your friends who invest in you as well. two way streets.

6. Routine is CRUCIAL for my daughter. Any offset in her routine, no matter how big or how small, throws her to a point that leaves her confused and out of sorts. We are very rigid with her routine because she seeks a rigid routine for her own happiness. Her routine is standard each day and we follow it as close as we can. We try to sneak in little tweaks here and there but she ALWAYS knows.

My goal in this blog, and advocating is never to make others feel bad. Yes it may happen but that is not my goal. My goal is helping, or trying to, others see some of the struggles a family faces living with autism (or other extended needs). We don’t seek or want sympathy….empathy is key. If there was more empathy in the world it would be a much better place. I don’t believe in sugar coating autism, despite how nervous or uncomfortable it may make others feel. Because this is our reality. It’s nitty, gritty, rough and tumble and it’s HARD. But this never means we love our child any less. We just wish the world would see things for the realistic view it is. Of course it isn’t all negative…we do have some good days….days where she is happy and talks in sentence’s. But those are souly dependant on how in line her routine is.

So I close this post with love and hope that others will come to understand, and that others may reach other to those especially in school who have extended differences. May your weekend be full of love, sunshine and rainbows wherever you may be or go ❤ stacking

 

 

 

 

A Glimpse into a parents world of Autism

image.jpegAs far as the actual diagnosis goes, Autism is “new” to our home. However, it has always been there we just didn’t realize it. As human beings, we all “feel”. We feel the same emotions, some more frequent than others. As parents, we all “feel” just as devastated as the next parent when our children are hurt or given a life altering diagnosis. Our feelings are more or less the same but situations are very different. With that being said parents of children with Autism live a much more complex life than those who don’t live with autism. It is far from easy, and we aren’t seeking sympathy but empathy would be so appreciated. Imagine yourself, and your neurotypical child going to a grocery store. Your child asks for a chocolate bar, you say no and alas a tantrum erupts. If you were to give in and give your child that chocolate bar the chances are high that the tears will dry and the tantrum will stop almost instantly. Now, imagine yourself taking your child to the grocery store and the moment you step foot and feel the warm air from the fan at the entrance blow upon you. Your child starts screaming, crying, rocking, holding their ears. You comfort as best you can but you are desperate for diapers so you need to go into this store and be as quick as you can. You enter further into the store and you pass workers talking, one drops a hanger, this escalates your childs meltdown but you NEED those diapers so pick up your speed while snuggling your child tightly in the shopping cart because compression helps bring a form of comfort. FINALLY, like the celestial lights from heaven are shining upon the diapers, you grab the both, put it in the cart and hurry to the checkout. Your child still holding their ears and crying. Then the beeping of the scanning items from customers a head of you is heard, most people think nothing of it, but for your child that is another trigger. Not to mention the rustling of the bags from items being placed then handed to the customer. The noise of the receipt coming from the till is another trigger. Frazzled, sad and exhausted you race to your car, load your child in the comfort of their seat where it’s quiet, and load those diapers. You get in the car, sit behind the steering wheel after starting the dvd player for your child with their favourite show and cry. Those simple trips to the grocery are far from simple. You feel anxious, overwhelmed, sad, frustrated, concerned all at the same time so to release these emotions you just cry. Because never sleeping due to a child who can’t express what woke them up isn’t exhausting enough. Once you’ve composed yourself, you begin the drive home praying that the red, yellow or green lights, stop signs, bridges, underpasses or tunnels you need to drive though don’t trigger yet another meltdown.

That is what it is like being the parent of an autistic child. With that being said I will be clear that not every child with autism is the same, EVERY single child with autism is different. There is a saying “One child with autism, is one child with autism”. You may feel you understand or “know” how to deal with autism because your friends daughter Sammy has it as well as your nephew. But sadly it does not work that way. That is why there is a spectrum.

Now I am not trying to make you feel bad for us, I’m trying to help you understand. Trying to help you step into our shoes if only for a moment. The grocery store is only ONE instance but there are many more. They may be rampages at home mid-meltdown from thrown routine, or head banging through the night from thrown routine or just trying to calm and regulate. There may be many food aversions, regression in speech, the list goes on. So how can you be supportive, or empathetic or try to understand what your son, daughter, niece, nephew, cousin, brother, sister, friend is going through? Below I will list a few suggestions.

  1. If you notice a child with autism having a meltdown. It may be a good idea to offer a sympathetic smile over a judging stare. Or a quiet “is there anything I can do to help?” (But just beware that another face, especially if unfamiliar may escalate the meltdown). If the parent has other children maybe watch over them, or hold the baby so the parent can tend to their child having the meltdown in some way.
  2. Going places is ALWAYS a struggle. There are SO many triggers, and some the parent may not know what sets their child off. Be understanding of this. For the parents, it is a very stressful outing regardless of where you may be. I personally find the most stressful is when we go to someone elses house. There may not be a baby gate by the stairs or doors, there may be no fenced in yard, there may be many hazards which looks like a death trap to the parents. Aside from that they need to CONSTANTLY watch their child as they climb, pull, knock things over or throw, or kick and scream because they are so thrown they don’t know how to regulate. If you have someone in your life who says “It’s really hard for us to go there.” LISTEN to them, it’s not easy for them to turn things down. They feel bad and anxious. Especially family gatherings. They WANT to spend time with you at Christmas, Easter, ThanksGiving, etc but it is beyond difficult. If they offer to host, it would mean the world to them if you attend rather than ignore or make other plans that they can’t make.
  3. Be there for them. They may in a sense are in combat every single day. Their child wakes up happy and the savour those moments. And are thankful. Or their child wakes up and want’s nothing to do with their parent. Throws their breakfast on the ground, takes their clothes off, pushes or hits their brother or sister for no reason. THEY NEED HELP!!! Offer to cook a meal, or take the siblings for a walk or to the park, or offer a nap to the parent, bring them a coffee, just be there. And believe me when I say they notice who is there, and who is not. It can even be as simple as a text saying “How are you?” or “Thinking about you”. The silence hurts. Especially from family. I understand this. I am thankful for my family who I do see, or talk to, or they check in with me but it makes us all sad for the ones who don’t. And my children notice who don’t which makes it harder.
  4. Love the child. Be in the childs life. Even if the child may not seem interested in you, it matters that you’re in their life. And remember the siblings too. It’s hard on them as well. They witness the sheer exhaustion and sleepless nights just as often as their parents.
  5. As much as people say “I don’t know how you do it” and our response is often “We just do, because that’s what we know”. We still have a sting that sits in our chest, kind of like a reminder of how different our life really is from someone who doesn’t live directly with someone who has autism. Since we received my daughters diagnosis’ (most of them) I have had a constant sting in my chest. We see how many challenges are a head of our children, and worry, and hurt they may feel. That is what leaves the lingering sting.

 

Having a child with any special need is hard. Before my daughter was diagnosed with Autism Spectrum Disorder, she had special needs already. She was born with Trisomy21 (down syndrome), CHD, a respiratory disorder, etc etc. I have 2 other children, one older and one younger than their sister (two boys). Both neurotypical. So I do know the difference between “special needs” and “typical”. I HATE labels but sometimes you need to use them. I know what we took for granted with our eldest, and with our youngest we notice how complex their sisters life has been as far as challenges go. Both my boys have had and do have their own things as well. My eldest has a severe peanut allergy, my youngest was born premature and has some developmental delay. But aside from that there are no neurological issues with the boys. So I know and live the constant reminder of the differences daily. With all this being said, and how exhausted I and many other parents of children with autism (and other special needs), we adore our kids. We just want you to understand, or at least try. And be supportive not distant.

Now go hug your loved ones! And appreciate the little things like eye contact, words spoken, engaging play. And cuddles ❤

Much love to all, and wishes for many blessings for all to come