Behind starburst eyes

All Roads Lead To Home

I have found with my eldest that he finds great comfort in routines, in doing things in the same order each time, and in taking the same routes to and from places. In essence he finds comfort in things staying the same. Unfortunately life doesn’t stand still. Life and people won’t stay the same. Situations, events, seasons, time, everything changes.

 

He was 3 years old when I started to try and help him to understand this difficult concept. I had made him a picture chart/calendar that I would update each week. Most of it would stay the same to give him comfort and familiarity. The thing that I would change on a regular basis was the WAY that we would arrive or depart from his familiar activities.

 

For example, we would go to a place called Airzone 3-5 days a week as I did a great deal of his socialization and behavioral therapy with him there. Airzone was just over a kilometer from where we lived at the time. Which meant that there were several ways that we could walk to or from it on any given day. Additionally there was a bus we could take or we could take a taxi. 

 

I knew how hard it was for him to accept any type of change in his daily routines, but I also knew that while I loved him with all of my heart I had to help him as gently and lovingly as possible to learn how to deal with changes. Both expected ones and unexpected ones. For if he stayed he did not learn to cope with changes, what would happen if he was on his way to work and a road on his usual route was closed? Would he be able to handle it? Would he end up calling his boss to say he couldn’t come in? Or would he be able to handle finding a different route to work that day?

Approximately half of the times we would come home from Airzone I would take him one specific way. It was his favorite way, he liked the things we’d see along those roads, he knew each of the houses and businesses we’d pass. The other half of the time I would take a deep mental breathe and deviate from our regular route. For countless times our deviations from the route he had picked as his favorite or preferred route were met with a full meltdown. He would be distraught for up to two hours, even after we’d arrived home and he could see that we’d managed to get home just fine taking a different path mattered not to him. He was completely overloaded by the change. While my heart ached I knew I had to do it. 

I wouldn’t take him a different route to get there as I knew he couldn’t handle it, and our actual time at Airzone was far more than just playtime. But to come home, well he knew we were on our way home and he’d be completely okay about that until I turned down a different street or did not turn down one he was expecting me to. It was a good thing that I still had an umbrella stroller for him for after he was done playing as him being buckled in was a huge safety measure on my part. For I could not have carried him for just over a kilometer while he was he was in the midst of a full meltdown. And he had such difficulty with change at the time that he couldn’t have walked anywhere with me. He would cry and scream “This isn’t the right way, this isn’t the way” and while it hurt my heart greatly I knew it was important to help him learn to deal with changes. I would talk, and explain the entire way home that it was okay that he was upset, but that this was just a different way we could get to the same place.

Once we got home I would cuddle with him on the couch, tell him he was loved and safe and that it was okay he was upset, that we were home now just as he’d wanted, we’d just taken a different way to get there.

It took 7 months of doing this with him before he became okay with taking different ways home. Fast forward 5 years and I now have a son that is excited about random road trips, and looks forward to adventures where he’s not entirely certain where we’re even going. He still has some anxiety about it if it involves overnight, but if he knows he gets to come home for bed he’s all for day trips anywhere, and anyway to get there is totally fine with him.

Knowing that each of those heartbreaking trips taking all the different roads that lead to my home with him when he was younger have lead he and I to this level of comfort make them worth it, completely. I still do it randomly off and on to ensure there is no regression with his comfort in that type of change, and he’s fine each time. He’s got that much more freedom for soaring as an adult because I made sure he understood that all roads can lead to home.

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Discipline will fix it

I was told many times when my eldest son was young that there was nothing wrong with him. I was told that instead the issue was actually my parenting. I remember one time in fact that I was at a friend’s house and he was having trouble getting to sleep. He’d gotten scared and it ended up taking me just over two hours of laying with him, cuddling him and singing to him to get him to calm down and fall asleep. Upon re-joining the rest of the adults around the campfire that had been built, mentally exhausted, aching inside for my sweet boy who just couldn’t deal even when he WANTED to, I was verbally attacked. Honestly there is no other way to describe what happened.

I was standing there not speaking to anyone specifically when this person started in on me. Screaming at me that I needed to stop baby-ing him, that he was never going to learn how to deal with the real world because of how I coddled him. I was told that if I would stop  him, treat him the way the real world would treat him he’d be “better” This person decided that how I raised my son was totally unacceptable. One of the things they said was that they were simply being honest by telling me what everyone there was saying behind my back. That part still strikes me hard 5 years later. Why, because these people were supposed to be friends, they had seen myself and my son for a long time and yet still there I was being screamed at about my abject failure in parenting my son. Not only that, but instead of concerns being voiced in a kind manner, there I was being centred out to be told both how terrible I was as a mother and that this was thought by all those that were there and they had apparently been speaking about this behind my back.

Finally, with tears in my eyes and my heart breaking at the random viciousness of this person’s words I stated, how about we talk about him like he’s just like “_____” which was the child of another person that was there. I stated that he was just like them. After all there was another child there that had it as well. It was then that the light dawned on my attackers face. Quickly I was encircled in their arms as they tried to apologize, telling me they had no idea he had Autism as well. It didn’t make it better. It didn’t make it hurt less that they were now saying they were sorry. It didn’t make the embarrassment at being centered out and told in no uncertain terms that I was a terrible mother easier to deal with. I stood there still and stiff wondering in my head when they would finally release me so that I could walk away from them physically as well as mentally to re-coup.

I had not told any of the people there before that moment because I didn’t feel like I needed too at the time. I naively thought that because he was my son and a beautiful person on the inside that it was enough. That he could just be himself and be loved and accepted as the bright, shining, sweet, individual he was.

I still see this person from time to time. They still swear that they were only being helpful by voicing what everyone else was thinking. That they think I’m a good mom now that they understand my eldest has Autism. But in thinking about the past, I can honestly say the memory of that night still hurts. I wish for a greater understanding of Autism in general so that other parents will not be subject to uninformed tirades such as the one from that night.

I’d been subject to other tirades from other people both before and after that incident, but that one was one of the hardest because it wasn’t from a stranger. The ones at the stores or parks I can brush off after a little bit, I can inform that stranger about Autism, and explain that it’s not what they think. Sometimes they simply walk away after I’ve said something, sometimes they argue with me, but always they are nameless people who theoretically I don’t have to see again. It’s easier that way. It’s oh so much harder when it’s people who know you instead.

To be perfectly fair, they were not the only person that knew me that had said things like that to me. My own family fought me tooth and nail about my parenting and my son because in many of their minds he was simply a willful brat that was all too often given his own way and coddled and spoilt. I was over-compensating for being a single mother by giving in to him and not disciplining him in the ways he needed to be a “good” and “well-behaved” child. Just like that person the views changed once I had an official diagnosis. That fact should bring me comfort, that NOW he’s accepted by those that know me because they also know a doctor has stated that he has Autism. But when I look at my son, I don’t see Autism, I see him. Just him. I see his smile, his starburst eyes. I hear his laughter when I tickle him, and his off-key singing when a song comes on the radio that he likes. I watch his body move and flow when he dances as if he were made of liquid sound. I watch the rise and fall of his chest as he sleeps cuddling his baby brother who often crawls into bed with him in the middle of the night. I feel his frustration about his printing when he writes to his pen pals, and I feel his excitement when his baby sister smiles at him. I know of the meltdowns, I live through each one with him, holding him, telling him he’s loved and safe, restraining him as gently as I can when he’s trying to self-injure. But I know of ALL of him, every single piece of him, and his Autism is not who he is, it’s just one piece. Just as being a big brother is not all that he is, or having starburst eyes is not who he is. They are all just parts, that together make up one of the most incredible human beings I have ever had the joy to know. But it’s even better than that, I don’t get to just know him, I get to live with him every single day, experiencing all the highs and lows of his life with him, and being his mother is more amazing than anything. If I had disciplined him more as I was originally told to do, some of his beautiful light would have been dimmed, and that would have been a tragedy for me, him and the rest of the world that would have missed out on so much beauty and light that pours out of him every single day.

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The Art of Being Still

I never knew how much I would need to develop the ability of just being still before I had children. Now it’s a gift when one of my sons are close to having, or have teetered off the precipice into a full meltdown due to sensory overload.

To speak, move and “flow” as if one is still, as if your very breathe does not flow further than your own lips is something I have honed over the last almost 9 years. It’s served me very well during tumultuous times with my boys. I use that to help temper the situation, to help them to know they are loved, safe and that it’s okay that they’ve had enough. That I get it and that I can be their safe place during the storming onslaught of their emotions and senses.

If you read about Zen practices one of the key components (that I’ve found) is that the art of being still calms the mind. Each meltdown that my sons have is intrinsically linked to a sensory overload. By not reacting to their meltdown with increased energy or movements, but with stillness, quiet words and slow breath my beautiful boys who’s natural inclination is to mimic those in their immediate surroundings begin to mimic me. In their mimicry of my own actions they too become still. They too slow their breath, their movements, their excessive synaptic impulses slow too.

95% of all information received from the 5 senses is discarded before the brain tries to process it in a neurotypical brain. The amount that is automatically discarded from a brain that has autism is a great deal less than that, and so they often suffer from sensory overload as the brain tries desperately to process most of the data that it receives from the senses. This is due in part because of them not knowing what is vital information and what isn’t.

By bringing them back to stillness during these sensory overload times it helps their neurological sensory filters to come back “on-line” so to speak. Which in turn allows them to regain their own emotional equilibrium. It is not easy in the beginning to be still when faced with the fierceness of emotions and frustration that often accompanies their sensory overloads. But with time it becomes easier to switch with one breath from being full of movement, sound, and energy to being still for them.

As my eldest has gotten older I have taught him to see the signs within himself that he is becoming overloaded and to find a quiet spot within his own mind and let that stillness and peace  flow throughout the rest of him before he has a meltdown. He’s not always successful at seeing it before he has a meltdown, but he’s only 8yrs old, so even half the time is fantastic to me. The other half, well that’s what I’m here for.

As my youngest son gets older, I know he too will learn how to access the stillness within himself, but until then I will continue to utilize my ability to be still and present within myself to help ease his storms.

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Control and Shift

My youngest son has a fascination with two specific keys from my laptop; Control and Shift. He has such a fascination that he would repeatedly take them off my laptop, walk up to me and say “here go” as if he was presenting me with something very special indeed.

No, it really didn’t matter how many times I would put them back on my laptop, he’d simply sit at it with intense concentration as he slowly worked his tiny fingernail underneath each one just enough to pop it off again. From a literal point of view they are just two simple keys.

But while I was trying to explain to the guy that worked in the Geek Squad at Best Buy why it didn’t matter if they wouldn’t replace those two keys (my son knows where they are, and with how much they seem to matter to him, I didn’t bother to pop them back on when I brought my lap top in for repairs) He looked at me, and said, “So it’s specifically the Control and Shift keys, hmm, I wonder what is so special about them” and to be honest I hadn’t really thought about it. I had simply smiled every time my son produced them and said thank-you and showed him how I would put them back onto my keyboard so I could use it.

But the idea had been planted, and for about a week it slowly circled around and around in my brain. WHAT was it about those two keys?

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From an artistic point of view one is an arrow pointing up, perhaps: Control Up, or Up Control. If he was telling me to give up control for I didn’t really have it, he in fact had it and could randomly change the neat order I’d put things into, take control and change it all any time he so desired well he’s right. I did think when I first started to have children that I could control situations, outcomes, in essence people. Not cruelly, or with malice intended but I thought parenting was much like cooking, follow a specific pattern, and receive the same results every time, even with new ingredients. Then I learned from my eldest that I was so far off with that idea that I actually giggle thinking back on it now.

My children are capable of taking the order I have placed things in and re-arranging it completely whenever they feel the need to do so. I’m not talking about physical things, (although clearly this post was sparked by that exact action initially) but emotional, spiritual, mental, & social.

The way I parent my children is based on what I feel in each specific situation is best for that specific child. It may or may not resemble how I dealt with an almost identical situation with a different child previously. Why? Because each child’s reasoning for their actions is different, and the core of each situation needs to be addressed, not just the “window dressing” that outsiders see.

I have let go of my need to control situations, and instead I try my best to flow with my children, for I am blessed to be a part of their worlds whenever they let me in.

My perceptions have taken a drastic shift in regards to children, parenting, and even about what unconditional love truly means as I strive to be the best mom I can for my wee ones.

I now realize that somethings aren’t needed the way we thought they would be, and that some things we never knew we’d need are of utmost importance, like the ability to be still.

I don’t know why those two keys are so important to him, or really what they mean to him, if anything specific at all, but I know what they symbolize to me.

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He danced while I cried…

Tonight I cried while he danced. He looked like poetry in motion as music became movement. As fast as the bass that was pulsating through the speakers, his feet became a blur as they almost flew across the floor and through the air.

I watched and I knew in my heart this right here right now, was what he was born to do. It wasn’t just the ease with which he watched another contender and added their moves to his own freestyle piece. It was so much more than that. It was the way his eyes glowed with certainty, for he KNEW what to do. He “gets” how to translate music into movement. For all the confusion he still has in various social settings, put him on a stage or dance floor and crank up the tunes and watch the joy and sense of rightness that glows from within him.

Sweat soaked and muscles burning from exertion and still his smile illuminates his own starburst eyes that are so much like my own. It’s almost like the combination of music and movement unlocks some secret special place within him, and you can almost physically see everything “clicking” inside his mind for him. Like the movement pushes the confusion and anxiety that often plague him completely out of his mind. While the music pulsing causes synapses after synapses to occur in places that didn’t communicate properly with each other prior to that moment. For those few minutes on stage you can see how centered within himself, and whole he truly is, and it’s more beautiful than words can describe.
It’s his version of “therapy” for in those moments on stage he feels joy and acceptance in who he is. There, right there, my boy who has been judged for not being able to stay still, for randomly twirling or flapping his hands when he’s having a sensory overload is judged on how well he can move,

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Fragile X Syndrome?

This morning N went for his ADOS testing, and by noon today he was officially diagnosed as having ASD. I wasn’t surprised, after all I’d been this route with my oldest son. I’ve watched and seen the signs. But as I sit here tonight, I’m scared, and I’m sad.

I’m scared because I don’t know if I have what it takes to make sure he thrives in life, after all what if C’s successes were just flukes on my part? What if I screw up with N? What if I don’t know how to help him?

I’m sad because the doctor wants to test him for fragile x syndrome. Fragile X Syndrome is a condition in which the X chromosome that was passed from ME to my sons had a codon error that caused to many repeats in a certain part of the X chromosome. This leads to the person’s FMR1 gene either not sending enough signals for the proper amount of a specific protein that is essential in the brain’s neuron development. Or in more severe cases where the pattern is repeated more than 200 times, it turns that part of the gene off completely and prominent physical features as well as definite intellectual impairment occur. I’m sad because only I could have passed this on to my son. A male can only get it from their mother. Apparently according to the CDC 1 in every 269 women is a carrier and doesn’t know it. I might be, and that makes me feel guilty and sad. I know, I should first wait until the tests come back. Even then, it’s not like I knew it was a possibility or anything. I didn’t even know about Fragile X Syndrome until this morning. But logic and emotions rarely see eye to eye.

Fragile X Syndrome scares me because of the seizures associated with it. I’ve seen how difficult it is for a friend of mine to have seizures, not so much the seizures themselves but all the aspects of his life that are affected by his knowledge that one could happen at any time. I’ve also seen the physical pain he endures every time he has one. No parent wants to know their child is going to be in pain, that’s just a natural part of being a parent.

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How Behavioral Therapy Changed Me

Almost 9 years ago I gave birth to my first child. He has been diagnosed with PDD-NOS. One of the KEY things that are advocated for children on the spectrum is behavioral therapy as soon as possible, as frequently as possible. For several reasons that are not important to this post I chose to research as much as possible about behavioral therapy and to provide this to my son directly. For who would know him better than I? Who would recognize the small signs that he was mimicking faster than me? So I started…

Many people who meet him now tell me that they wouldn’t have recognized that he was on the spectrum right away or without really “looking” for it. Several people that have known him all along tell me how incredible the change in him is over the years.

I devoted every single waking moment from the time he was 2.5yrs old until he was 6yrs old to him and all that he needed to learn to function in our society. I broke down every situation we came across and explained every person’s part in it. I explained what wasn’t said out loud but was inferred, how to tell when something was inferred, how to infer himself. As well as the crucial lesson of how to NOT infer something he didn’t mean.
From the time he was 6yrs old until now I have had to share the time I devote to him with his younger brother and then with his younger sister as well as his 2 step-sisters. But still I make his behavioral therapy a vital, integral part of every single day. I will take the time to explain everything I possibly can to him, because I HAVE to. If I don’t, he won’t “get it” and you know what I’ll be blunt, I think I’m doing a damn fine job. I’m proud of the son I’m raising. I’m going to say that again because it bears saying twice it’s that important: I’m proud of the son I’m raising!

I made sure I was breaking down every single little social construct for him to examine, digest, process, and assimilate into concrete information he can later use in different social settings to obtain the results he wants from them. Now he might simply want to make a friend, or eventually walk into the tumultuous waters of romantic relationships and while I know he’ll have trials, heck we ALL do! He’ll do okay, no scratch that, he’ll thrive! Why? Because of every moment I put into making sure he was given every single advantage I could give him, and every scrap of helpful information I could think of to ensure his success in all he chooses to do in life.

Now the unexpected part of his behavioral therapy…IT RADICALLY CHANGED ME!

By having to break down every social construct to it’s basest nature/reasoning I had to understand those same social constructs and as I started to explain them I’d think to myself how ridiculous some of them seemed. And eventually I’d hear similar thoughts from my son about some of them. And at first I’d try to justify why this or that was the way it was when I could see it was ridiculous just as he could. But as time went on, we came up with a short hand almost by accident, after I’d explained something one of us would look the other in the eye and say “I know, but it is” and that said so much to both of us. It reaffirmed for him that it wasn’t just him that didn’t “get” why such a social construct or rule was in place in our society in general or in that type of situation specifically.

But it also was a wake up call for me. It made me question SO many social rules, and slowly without actively realizing it, I started to discard the ones that didn’t make sense to me. I stopped adhering to them, I started to become a lion amongst sheep if you will 😉

In part it was because I gave my son that very same freedom. There were oh so many times he would tell me he understood that what he wanted to do wasn’t considered socially acceptable. That he understood he might be made fun of but that he had to be true to his own self. Why did he say that? Why did he choose to go to the mall in May dressed up in his transformers costume, or have me paint his nails crimson red because he thought it was a great color? Because I promised him, I’d hold his hand in support no matter what his choices. I told him I couldn’t be prouder of the young man he’s becoming if I’d chosen every single aspect of him myself ahead of time. I told him that I love him unconditionally, and that means NO MATTER WHAT, FOREVER. I told him to be proud of the Lion he is, to not worry what sheep think. I told him that REAL friends will care for him EXACTLY as he is.

I’m the type of woman that feels if you’re gonna talk the talk, than put on your grown-up underwear and walk the walk!

So I did, and now I do. Does that make me uncomfortable for some people to be around, YEP! Does the fact that less people like me with how blunt I am now sadden me, honestly hell yeah. I’m still sensitive to criticism, but I’ve learnt that it’s better to be criticized for who I am than liked for who I’m not.

A cousin of mine recently told me that I’m “transparent” because I don’t “do” all the fake niceties. If I’m nice, it’s genuine, and if I’m screaming that I can’t stand you, well then that’s real too (I know I need to work on my temper, but that’s another post 😉

On the plus side, it means that I don’t EVER offer flattery. I do however frequently give sincere compliments. Because it’s NICE to hear the positive. I simply make sure what I say is the truth as I see it. So if I say to someone that their smile lights up a room, I mean it! If I tell someone that I treasure their friendship, than you guessed it I really do!

Am I aware that I’m talked about behind my back in ways that at times make me cry, yep that’s why they make me cry. But I refuse to let someone else dictate who I am to be and how I’m to live my life.

The ONLY person that has to live with all of my choices is me, so I need to be at peace with them. Even if I’m the only person that is, than that is what it is.

It’s ironic, because I’m more blunt, and harsher in my personality than I used to be I am liked less than I used to be. YET, with all that I’ve struggled with, and all the times I’ve fallen asleep physically sore from the gut wrenching sobs I’ve cried when the days were really bad for my son I’m now ALLOT more sensitive and caring than I used to be. People that I call a friend matter to me, deeply. Even when their “new” friends, because I stopped a long time ago trying to make friends just to “have lots of them”.

Instead I open up to those souls whose energies resonate with me, who make me feel like I’d be honored to have them in my life. I TRY to make friends with those people that I can see would be a true blessing to my life.

So my dear readers beware, life isn’t easy being true to your own self at all times and if you too try to embark upon either helping your own child with behavioral therapy or *gasp* becoming a behavioral therapist take heed to my warning, it WILL change you! 😉

You WILL have less time for BS. You will say what you mean, and mean what you say. You’ll “see the other side of the coin” about most situations, even when it’s to your disadvantage to do so. You’ll notice when it really was your fault, and you’ll feel the need to own up to it. You’ll feel, truly feel a connection with people that you call your friends or family. How you treat them, even, no especially when they don’t realize it; will matter to you. In essence, you’ll want to be able to look a child in the face and without embarrassment or shame explain your actions when they ask why you did or said _______.

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As I am…

I am far from perfect, but each day I try my best to be a better person than I was the day before. Never do I try to be better than another, for I’ll never know the full extent of what it’s like to walk in their shoes. Just as no one knows what it is like fully to walk in my shoes.
I’ve made many mistakes, and I own every single one of them (happily or not is beside the point) I’ve done some amazing things, seen some incredible sights, been a part of crazy shenanigans, made beyond beautiful memories with many, felt deeply, laughed loudly, loved passionately, hated fiercely, chased dreams with wild abandon, made friends, made enemies, even made 3 babies 😉
I am stronger than I appear, and more sensitive than most would think.

But through it all, I am me, accept me as I AM not as YOU WANT me to be.

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Scraps of beauty part 2

Well I found more scraps that were just begging to be turned into another purse. 🙂

This one was inspired by a friend of mine, simply because I can completely see her carrying this one around while on some fantastic dig, mining all sorts of lovely gems out of the earth, popping them in this over-sized shoulder bag to be brought home with her.

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Once again I’ve done embroidery on the shoulder strap, this time a pattern that reminds me of wheat st.

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I also added a pocket to the back for smallish items such as a cell phone, it’s got the same sun as the front has on it.

 

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Scraps of beauty

I love to create and I enjoy sewing, because of that I have a fairly large collection of various fabrics. Like most crafters I still see the beauty in the scraps that are often just tossed into the garbage at the end of a project, to that end I’ve always kept the majority of my scraps even when they are fairly small “just in case”.

Lately I started to think to myself, what on earth could I do with my scraps, I still love those fabrics even if there isn’t enough of each one to make a whole project using just that material when I came across the idea of patchwork purses.

I’m ridiculously pleased with the couple of purses I’ve created so far using just my scraps:

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The little bit of lace at the top is actually how this purse closes as I’ve put 3 diamond shaped buttons on the front that slide through the lace to close it.

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I LOVE the embroidery function on my sewing machine makes me giddy, as you can see I’ve used a running heart stitch across the strap for both the practical purpose of making it lay flat as well as the esthetic appeal of embroidery running along it.

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