Behind starburst eyes

Why I don’t often write about my sons anymore…

When I first started this blog, I would write quite frequently about my children. I thought that by giving others a glimpse into the world of Autistic children, and the parenting of, that it would help. That it could show the world what our lives were like; both the positive as well as the struggles.

There is a difference though between when a parent of a neurotypical child writes about parenting, and a parent of a special needs child writes about parenting. I didn’t realize that when I first started writing. I didn’t realize that far too often the media utilizes those same struggles to suggest that a parent of an Autistic child should be pitied. Mostly I didn’t realize it, because I don’t pity myself.

I see myself as having been gifted 3 beautiful souls to guide towards their fullest potential. I see myself as a kind of tour guide. I’m only here to help till they themselves feel less like tourists and more like locals. The thing is, I thought that was what all parents have to do.

I have never been a mother to a neurotypical child, so maybe it’s totally different? But from what I have heard, it’s still hard as hell to be a mom; regardless of a child’s neurobiology.

So why is it that having a rough moment or day or even a totally rotten week is viewed so differently when the child is classified as special needs? It’s different because we view having a child with a different neurobiology as something bad, as something to grieve and be depressed about. Only I’ve never felt that way about my kids.

So when I write, I have to consider what kind of impression am I adding to society of the reality of having an Autistic child. I don’t want to add to the gross misconception that they are less for having a different neurology; because, they aren’t. The society that equates how much money a person can contribute to corporations (through working at, or purchasing from) as a human being’s only worth is what should be pitied, and seen as less than; not my beautiful children.   

 

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We’re not in Kansas anymore…

“Of all the things that are different its the bees that make me homesick, they look like regular bees but they are blue and purple. Every time I catch a glimpse I think it is a real bee but then I am reminded that it is not home.”

The above passage from a book struck me deeply.

It made me think of many conversations I have had over the years with many persons and the struggles of trying so hard to “be a part of this world” when you feel like you really don’t belong. And isn’t that one of our most basic needs as human beings, the feeling of belonging? The feeling of being accepted? The feeling that yes, we too are a part of something larger than just ourselves. Some people find that feeling within their families. Some find it with a couple of close friends. Some find it at a place of worship.

But what about those that don’t find it? What about those that struggle each and every day to just BE a part of a group that loves and accepts them unconditionally?

98% of our DNA is the same as every single person’s on the planet, surely 2% out of 100% shouldn’t be enough reason for someone to feel different and excluded from the rest of the world…
How can we as their fellow human beings help? I don’t know. I don’t have the answer, but I’m hoping someone somewhere reading this just might. SO PLEASE, add your ideas at the bottom. Perhaps with many minds we can find a way to ensure ALL people feel the love and acceptance they deserve as fellow human beings.

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True Inclusion Means Real Accessibility

This past week-end my niece had a sleepover at my house and the next morning we wanted to take her and our kids to the park. Awhile ago we had gone to a park in our town and it had a wheelchair accessible swing, so of course we took the kids to that park. Below is the picture I took after we got there:

 

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The swing modified for wheelchairs was gone. While Miss.F had no idea about the swing, my husband and I had and we were truly disappointed, as we’d chosen that park so that there were parts of the park that all of the kids with us could use. I’m fully about modifying things so that all can participate, after all who didn’t like to swing on a swing set as a kid? To that end I have contacted our Parks and Recreation department.

The woman I spoke with was very helpful, and I truly appreciated it. She forwarded my questions to their manager and said he would contact me within 2 business days. About 2 hours later he called to explain that it was ready and waiting to be installed but they were waiting on the manpower needed to do so and that the wait could be 2-3 weeks.

Almost a month on top of the time it’s already been down, the only wheelchair accessible swing in our town. I don’t like it, I understand that all work on the 30+ parks and trails needs to be prioritized but it’s the only swing many children in our town can use safely.

I have emailed our Mayor John Henry to hopefully see about implementing a change in the process with which projects are prioritized in the parks department. After seeing how he interacted with all of the kids and families at Grandview’s Open House last night, and what a big supporter he is of inclusion and services for special needs children I have full confidence that he will do whatever he can to help alter they way they prioritize what needs to be done at each park here in our town.

 

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Blurry Pictures and Clear Signs

CAM01152  I read another’s blog post today. It can be found here. What I got from it was that it was about his fears for his Autistic daughter’s future after watching two girls from the same grade not even notice her during a morning walk. As well as his hopes for his daughter’s future after attending a dinner filled with Autistic young adults.

It struck a cord with me because there are moments when I worry for my boys. I worry sometimes as I watch other children surpass them socially, I worry as I see news reports of an 11 year old Autistic girl who didn’t respond being tasered by police when found walking nude along a free-way. (Full story found here) I worry when I think of the only time Mr. C was in school (preschool) and his teacher told him he wasn’t good, that he was lacking and so many other things that tore at his fragile self-esteem which lead me to taking him out of there and choosing homeschooling instead because I didn’t want to risk him having more teachers like that. I worry when I start to think of the world as it is right now in regards to acceptance and the lip service that is often given, but real efforts not.

I was still thinking of it when I was getting Mr. N out of the bath (juice, play-doh, and stickers make one huge mess lol) as I closed the bathroom door behind us, for the first time he noticed something I’d forgotten was there; a blue index card I’d written that says “You are perfect exactly as you are” Originally I’d written it and put it on the outside of the bathroom door for the 3 children quickly getting older and noticing the media’s messages about superficial images. But he pointed at it and asked what it said. I read it to him and he smiled and said “Awe” and I asked him who it was about, he told me me it was about him, that it was his… He was right. He IS perfect exactly as he is, all of my children are, and instead of being worried about their future I’m more determined than  ever to ensure I help to change the world’s perception of Autism so that people will be more open to truly seeing them. To talk and write and do whatever it takes to help create the world I want for them, one where they and others are valued as they are, one where diversity is embraced, one where others see the value they can bring to a friendship and try to cultivate them, one that sees my boys and all people as perfect exactly as they are.

 

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Our Epic Camping Trip: Chapter 2 (Growing our village)

When N was born 2 months early and had to stay in the NICU one of the hardest parts was that I couldn’t hold him all the time, he’d get too cold no matter how he was bundled and he’d have to go back into his incubator after the smallest amount of time, and that was when he wasn’t under the lights for such severe jaundice when we couldn’t touch him at all. I swore that once he was home with us I’d cuddle him every single day for hours and hours. Until he was about a year old he was okay with that, but then slowly day by day, little by little it changed. By the time he was 18 months he hated being touched at all, he wouldn’t allow cuddles and he’d have a complete meltdown if I tried to hug or kiss him. It was at the point that I’d cry regularly to my sister-in-law that it was SO hard to raise a child that would hit me and scream if I tried to offer affection. I’ve written about the pain and struggles of loving a child and not being able to show them love through cuddles and touch here
Perhaps it was the lack of additional stimuli, perhaps it was that a bond had been formed between them a year prior when N had his horrific allergic reaction and “D” was his medic, perhaps it was cause D was L’s dad and N knew this. I don’t know, and the whys really don’t matter.

What does matter is the picture I have imprinted in my mind of watching, heart bursting as my youngest son asked someone intentionally for a hug, received it and kept on holding on until he was picked up for a full on cuddle!!! N cuddled into D, resting his golden-haired head upon D’s shoulder, one little arm slung across his other shoulder and a clump of brown shirt gripped with chubby fingers completely content with being held, with resting upon him. MY son was content being held, and I was trying not to cry. There was the man who had saved him a year before, doing something almost as amazing, he was cuddling with N, because N wanted him too! He wanted to be held, and I didn’t give a rat’s ass who he wanted it from. I was trying not to cry because it was so beautiful to see, it gave me hope that one day he would be okay with physical affection on a regular basis. Not just from me, but from others too. He felt safe, I could see it pouring out of every fiber of him, and I was almost brought to my knees, I was so humbled to be gifted with this sight.

Then it just gets better, cause honestly this camping trip was truly and utterly epic in the fact that I wondered when I’d wake up half the time, so singularly beautiful were the scenes woven into my family’s tapestry those 3 weeks.

My husband and I went to the fire pit ___ feet from our tent (I use ___ cause I’m terrible at guessing distance, but suffice to say it was super close, close enough that you could hear the wee ones while at the fire pit if they woke, and you could hear the people from the fire pit while in the tent) Someone was playing a guitar and I was sitting beside them and so I didn’t immediately hear N wake up the one night. M (D’s phenomenally stellar wife) came to tell me N was awake and D went to him while she came to get me. I felt so blessed that D had not chosen to “respect my privacy” by not entering my tent, that instead he’d chosen to enter so that my son could be immediately comforted. That alone was so incredibly heartwarming for me. I understand that in our day and age people often won’t do something like that out of concern that they would upset the owner of said tent with what would often be viewed as an invasion of privacy. While I understand that is why many would not enter at all, when it comes to one of my children being upset I don’t feel that way about my tent at all. I appreciated GREATLY that my child’s emotional wellbeing was the only concern of D and M and that they made the choices they did!

My throat constricted at the scene before me as I entered my tent: D on his knees with his arms gently cradling N, and once again my sweet boy had his head resting calmly upon D’s shoulder. His eyes were already shut again, a tear track the only trace of upset left upon his serene face. While I was saddened that he’d had a bad dream and had woken up upset, what transpired with D and M and him will always be a memory I treasure, in part because again there was N, totally and utterly accepting of this other person as someone he could trust, and also because there were 2 people who cared enough about N, not just in a vague “all children should be valued” way but in a concrete, “N is important to us as the individual he is”. He was in essence taken in as a part of their village for the duration of our camping alongside them, and for that they both will always be a part of the village of my and my family’s hearts.

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Dust bunnies versus sticky fingers

“Sometimes I can hear my bones straining under the weight of all the lives I’m not living.” by Jonathan Safran Foer

The above quote was found unexpectedly while I was looking at a sweet story about a dad that was going the extra mile to ensure his son had a wonderful Halloween. There right beside the heartwarming story was that quote, separate from the story.

I read it, and I felt like I had been punched in my solar plexus, it resonated SO deeply within me. I am often bothered by all that I haven’t accomplished, by all that I have not yet done. I try every day, but there’s never enough time, and there’s always something that needs doing that I hadn’t expected. I’m in my 30’s and I feel like all of those 3 decades have passed in a blur. Each year fluttering past in wisps of color and opportunity too fleeting to catch or hold on to. I try to make every day count, but I find that the mundane things often get in the way, like cleaning. It does not seem to matter what I try it always takes me ages to get the house cleaned every single day. No matter how spotless it is one day the next it’s a mess again and again I’m forced to choose between cleaning or adventure. I know I have to be the responsible adult and clean, but I want to just experience each short moment I have with my kids, I want to play with abandon with them, and laugh with joy at their discoveries, I want to go on “treasure hunts” and nature walks, and trips to the library and read under a tree from books about anything and everything to them. I want to be able to be present in the moment with them and not always “in a minute” “after I’m done the dishes we’ll ______” etc. A great deal of the time I do say “piss on it” to the housework and the time that gives me to just experience little hands fluttering across my triceps as I walk for 2 hours with N in the hiker as I walk to get him a donut and back home is priceless. Just sitting here, I can still feel the warm sun on my face, his icing covered fingers lightly touching my triceps as he yells his excitement at an orange jeep that drives past us. I treasure those moments more than I can say, they ARE what make me “me” each of those memories.

So among other things that I have to do cleaning is for sure one of the most time-consuming, so any tips dear readers? Please keep in mind I have a house with 3 adults (my mother is NOT able to help due to her health, and I’m just happy to have her company) 3-5 children, 2 of which are on the spectrum, of those two one that needs constant attention and assistance, and the other one is homeschooled by me and therefore needs time every day for that. As well as one that is not yet walking, but does love crawling everywhere she can.

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Favorite Children’s Books for Children with ASD

help me be good seriesI LOVE author Joy Berry’s series “Help me be good”. It’s a fairly large series, there are 29 books in all. It originally was published in 1988 and I read every single one of them as a child myself. Fast forward an undisclosed amount of years to when my eldest son was 3 years old and we were at our local library. Every time we’d go I’d check out the books they had for sale as each was only $0.25. One cold morning I spied the entire collection all in pristine condition on their sale shelf. Excited doesn’t even begin to describe my reaction. I scooped up every single one of them! Why do I love this series so much? Because each book deals with a common behavior, discusses how others feel when a child is choosing that behavior, what a child choosing those behaviors might be feeling, and other positive ways of dealing with those emotions, or situations, all in easy to read, direct language that doesn’t use metaphors or confusing sub-text that a child on the spectrum might not pick up on. From the day we brought them home I read one every day to my son for the better part of a 2 years. Each day he would pick a book for me to read and I would pick one of Joy Berry’s books to read to him. He loved them. They helped him to understand social concepts easily and without feeling bad at not getting them without the books as it was never “about him” it was always about “another child” one from her books.

Interupting Joy Berry BookThe book about Interrupting says “You are interrupting when you talk when other people are talking… Try not to interrupt people who are talking to you. Allow them to finish talking before you speak. Say “excuse me” if you must interrupt them. When someone interrupts you, you might feel angry or frustrated. You might think that person is not fun to be with.”

At the end of each book it always says “It is important to treat people the way you want to be treated”

See, easy, clear explanations of what the behavior is, how people feel, and how to avoid doing it with simple blunt instructions on what is socially acceptable and what is not. I’ve already started to read them to my younger son, and while he’s not super keen on them yet (he won’t be 3 until Oct) with him already being diagnosed with ASD I think it just makes sense to start early.

After all a large part (not all but a big part) of ASD is a deficiency in social development and understanding. If my child had massive issues with math I’d do my best to focus on helping them improve their math skills to the best of THEIR abilities. No I wouldn’t expect them to get a PhD in mathematics but I’d help them to learn as much as they could to help them thrive to the best of their abilities. Teaching social skills from an early age in a more intensive or focused manner just makes sense to me for my boys with ASD. Their brains are hardwired differently, but different doesn’t mean they can’t learn, it just means they might need different ways of being taught and more time to learn the same things as a child without ASD.

For those that are interested, if your local library doesn’t have this fantastic series it is available on places like Amazon.com or Chapters.ca
Chapters also has her other series: “Let’s talk about” and “A fun and easy way” both of which I’ll be getting for the eldest to read and eventually reading with the youngest. 😀

If you’ve read her books, let me know what you thought. Were they a helpful book series for children with ASD? Or even helpful for children in general? (I personally read many of them with the kids I looked after in my daycare years ago that weren’t on the spectrum because I thought they were great for all children in general but especially ones that have social skill deficiencies.)

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The mystery of crayons

Another box of crayons has been unwrapped. N still loves very much to unwrap each one. His slow methodical precision is fascinating to watch. No piece of paper is left, no matter how small. I wish he could type or sign or say what he appears to be looking for when he unwraps each crayon. It’s certainly not an absent-minded action on his part, for each movement of his little fingers is deliberate and sure. His eyes never look anywhere but at the crayon as he unveils it in its entirety. Is he making sure that each part of it is the exact same shade? Does he think something else might be hidden underneath the paper? Or does the feel of the paper it’s wrapped in scratch his hand when he tries to color with it? Is he removing an additional sensory stimulation he does not find appealing? One day when he can answer me, I’ll ask him and listen with bated breath as I’m given more than just a glimpse into the thoughts and inner workings of his precious mind. Until then I will marvel at his concentration, and at the deliberate movements of tiny fingers busy at work. I will marvel at how his eyelashes flutter as he stares so intently upon the unveiled crayon and carefully places it with the others, only to pick up another paper covered one and start again. He won’t be done the task he’s set himself upon until the box is finished, and I won’t ever be done watching him in awe as I get glimpses into his breath-taking mind.

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Organizing Foods

MH900430659 N gets very excited by how foods are presented in bakeries, delicatessens, and the like.   He’s happy to try many different foods from these places, but when presented with these same foods at home he is unwilling to eat them. I was speaking with a friend who asked me an absolutely brilliant question about it. She asked me if I thought it was because of how visual he is and how neat and organized the foods are in those types of places that he preferred them. She asked me if I’d put his food into lines on his plate before and if so what did he do. To be honest I hadn’t done it before. I’ve made pictures with his food (happy faces or cutting roasted potatoes in the shape of cars) but I hadn’t actually taken his foods and made lines on his plate with them. With how much he loves organization, and lines in general I am actually quite hopeful that this just might work to help him eat better/more. Considering he’s currently on supplementations of various vitamins as well as a meal replacement drink due to his lack of current food intake I’m totally excited at trying something that just might make a positive difference in the amount of healthy foods I am able to get him to eat and enjoy! Wish me luck dear readers, this momma’s about to get the mandolin out to make some super organized veggie and fruit lines 😀

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Autism is NOT a death sentence

Just over a month ago C and I made cookies for his home school group at the YMCA to help promote Autism Acceptance. With how positive of a reaction we received from them I asked one of the people who helps to coordinate the Orientation for Parents of Children Recently Diagnosed with Autism at Grandview Children’s Center if they would be interested in having some at their next orientation. She spoke with the her colleagues and they said yes. So today I went and got more business cards for the packages I’ll be dropping off Saturday morning. I’m happy that they said yes to them as I feel they do have a positive message to them. So often I hear of parents being absolutely desolate about their child’s diagnosis, and I think our perception as a society needs to change about that.

Last year on C’s 8th birthday his father and I were not with him. The night before, I called everyone that was supposed to come and told them that we had to post-pone his birthday party. Why? He’d done NOTHING wrong. We had to cancel his party and leave him with his Nana because we had a funeral to attend. A close friend’s 23 month old daughter had passed away. Now that was something to be absolutely desolate about. Her’s is a place that will forever be empty at their table, the memories of that beautiful precious little girl are what her parents get to hold instead of her. That is a truly devastating loss. One that those two parents must bear.

But to perceive a diagnosis of Autism as the same level of tragedy as the loss those parents deal with every single day is in my mind an insult to both the little girl who will never have a second birthday, as well as to the child diagnosed! It is NOT a tragedy that one’s child has been diagnosed with Autism, it is not something they will die from. Will there be some areas of their lives that are more challenging because of how their neuro-pathways work? Yes. But that’s what parents are for, to help their children to thrive to the best of the child’s abilities. Now I understand that some people would argue that a child classified as “Classic Autism” or as “Low-Functioning” does not have the same level of abilities to function as a child that is classified as “High-Functioning” I’m not arguing levels of abilities, but I am arguing that Autism is not a death sentence and should not be approached as one.  Yes there will be times that are hard for both parent and child. There will be times when as a parent you might not be sure how best to help your child. There will be times when they are judged negatively by others, when your parenting choices will be called into question by others, but all of those statements are true for parenting of any child!!!

To mourn the loss of the child you thought you had, the one that won’t _______ because they have Autism is unfair to your child. They are still the same child as they were prior to a diagnosis. They still have feelings, thoughts, dreams, wishes, fears, hopes just like any other child. Will they need different kinds of help or parenting than you originally thought you’d have to provide when you learnt you were going to become a parent, perhaps yes. But our job as parents is NOT to dictate what they need, but to observe them and their ways of communication to understand what each unique child needs us to provide them with and help them with.

These children can and do go on to lead lives that are happy and fulfilling for them, perhaps it’s not your definition of happiness and that’s okay because it’s not your life, it’s theirs. As long as your child is alive, and happy what on earth do you have to mourn???

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