Summertime stimming and conversations with parents

Summertime in our house is so loud. It’s unbearably loud at times. I understand the need to stim, the happiness, the joy, the excitement. I understand that it is self-regulation and that it helps things. I know that it is important and that the problem with stimming is all in its perception. However, this house is loud.

This summer, Penny and Aiden are louder than Jake. This is partially due to Jake finally understanding and appreciating quiet and time alone. He has taken to playing upstairs in his room with his Lego without anyone else present. This is a major development. As he has now learned to read, he is also happy to sit and read his favorite books endlessly. So much quieter than last year.

But Aiden. Aiden is a yeller. A hollerer, and a stimmer. I still don’t know how much of what he does is learned behaviour and what is his own little personality. When he is mad he is instantly in tears and yelling at the top of his voice. When he is happy he hums. A loud, monotone hum that has no music to it, it is simply a loud hmmmmmm sound. It’s a happy sound, and it always makes me smile because I know how happy he is. We first heard it when he was super small and eating. He would hum that same sound, the exact same tone, while he happily ate. It was adorable.

Penny is learning some words. She can say Mom, Dad, Aiden, Kitty, more, hi, yes, and no. She also manages to vocalize her demands and objections quite clearly without words. She loves to pretend play, much more than either of the boys ever did, and she is super interested in playing dress-up. She is quite social, and super observant. She knows how to unload the dishwasher and clean the toys up. The boys are still learning those things. She knows how to put away laundry and work the iPad as well as anyone. She is obsessed with buckles, and needs them done up all the time. She seems to love doing them up as well as simply knowing that they are done up. She can’t leave a buckle unbuckled.  Currently, she enjoys walking around on her tippy toes and doing whatever her brothers are doing.

So I wonder, where on the spectrum might Aiden fall? Penny? Are they even on it? I don’t want them to face those struggles. And yet, I am not afraid of autism, it doesn’t hold the same intensity or fear over me that it once did. Rather, I wonder about them so that I might know them better, that I might support them better, and love them better. I wonder, because I know all the signs and live with an autism filter on my eyes 100% of the time.

Stuffed animals seated around the room, ‘watching’ their own personal ‘screens’

I recently heard a story a friend of mine tell, for a completely unrelated reason, about a little boy I’ve never met who gets so happy and excited that he bounces and waves his arms behind him. He’s very well-spoken; in fact, he’s almost like a little professor. Based on my experiences, I suggested that she mention to his mom that maybe he should see a pediatrician to be screened for ASD. My friend laughed, saying, there is no way she would want to be the one to suggest that to his mother.

I get that. I really do.

It’s a scary thing to say.

It’s a scary thing to hear.

But I’m now at a point where I am really asking myself, why? And how can I change that?

I asked Aiden’s preschool teacher four times over the past school year if she had any concerns about him. I asked specifics, did he socialize well? Listen to instructions? Make eye contact? I wanted to know. I will ask his kindergarten teacher the same questions. I am not worried about him. I am not concerned that he will turn out autistic. I just want to know what he struggles with so that I can support his teachers, work with him, protect his self-esteem, and help him build relationships. Exactly the same way I feel about Jake.

Penny will be two this September. If she all of a sudden develops regressive autism, I will be surprised. I would be sad, if I didn’t hear her call me Mom again. But it would not change my love, my hope, and my passion for her at all. I would, however, change the way I approach her struggles and her needs.

I want to be able to encourage parents that screening, that investigating, and that understanding their kids is a good thing. It’s doesn’t have to make you feel like a bad parent; it can actually help you to be a better one.

I think the fear comes partially with the feeling that someone else has to tell you. I wish that we could take that part away. The fear, and the feelings of judgement, inadequacy, and defensiveness. Autism Awareness campaigns just haven’t helped with that yet though. More than awareness, we need education, understanding, and acceptance, to the point where moms can talk about it in loving, kind, and accepting tones. And not just with other moms of children with disabilities.

In my house, we do stimming. We are loud. We hum, loudly, and we buckle things up. We love our visual schedule. All of us. I don’t know where we fall compared to other families. I do, however, wish we could encourage and talk with them.

On Therapy and Shame

We are looking for a new behaviour interventionist.  I think I may have found one.  I am hopeful.

We are taking a break from ABA therapy.

I am incredibly thankful for the interventionists who have come and worked with Jake and our family over the past two years.  They have been professional and kind, respectful and wise, and have taught Jake and me so much.  Now we are ready to move on.

I want Jake to learn more in-moment strategies and skills.  I want to avoid tiring him out further and adding to his stress.  I want to see him actually apply some better behaviour skills, rather that learning them, practicing them, and then forgetting or refusing to use them.  My plan is to have someone come and work with us twice a week for a while, once during the day for a few hours and once during the evening.  I want them to integrate and join with us in whatever we are doing that day, and help us negotiate the trouble spots.  I want them to slow us down, so that we have an outsider voice breaking the tension.  I want them to work with Aiden, my husband, and me as much as with Jake, so that we are all learning together how to function better as a family.

I am hopeful.

Really, I want to better support Jake when he is struggling.  I want to slow down my reactions so that I can think clearly and see what is triggering him.  I want to be able to think about autism and what I know about how he works instead of getting frustrated about the behavior and never dealing with the root of the issue.

I want to model for Aiden how to be a friend to Jake.  I want to model for Jake how to relate to his brother and parents.

I read this amazing blog recently.  AMAZING.  I took so much out of it.  She writes about everything I feel and articulates situations I completely relate to.  Her big point, however, is that our medical culture and history treats mental health as something to be cured.  This is not always in the patient’s best interest, as truly, many mental health conditions can never be cured.  Rather, we focus on therapy as a way to deal with, cover up, and mask the underlying condition.

I think that therapy can be incredibly helpful.

We will most likely do more therapy in the future.

However, I believe that therapy has to be done very, very carefully.  The goal of any intervention needs to be helping the person learn a skill that will make their quality of life better without demeaning or attacking their self-esteem or self-value.  Learning ways to communicate is so important.  Forcing children to repeat words that don’t empower them and leave them still unable to explain their intelligence does not help.

The adult autistic community has written much on this subject.  They have totally convinced me that one does not need to be verbal to be intelligent and one can be disabled and still be incredibly valuable in society.  However, when I encounter real life scenarios with other parents at a playground, for example, stigma, judgment, and ableism are prevalent in my town.

Just the thought of talking about autism with other parents is scary.  How do you say, my child is on the autism spectrum, I can see similarities in your child, can we talk about that?  I can’t.  I just can’t.  I can’t even say, I know that there are so many kids these days, with everything from autism to ADHD and everything in between.  What makes your kid special?

What I have learned about autism makes me want to change my community.  We are a lovely community.  Small, but not too small; Christian, but not overly religious; helpful but not too nosy.  And yet, we struggle to change.  I would like to see parents who step up to each other and encourage each other even when they don’t know each other.  I would like to see parents who can say, my child is autistic, it’s nice to see him playing with yours.  Instead of, why don’t you teach that kid some manners?

We need to change the way we look at each other on Facebook.  I know from experience, I have been in tears, and not known how to get help, and posted a status update that says something inane like, “so tired of cleaning, why do they make so much mess when they play.”  If I had actually been on the phone with someone, I would have been crying, explaining what went down that day, how my heart aches and I doubt my parenting, how I love my kids but feel like I’m failing.  We would have cried together, then shared a story, made plans to have coffee or wine sometime soon, and ended the phone call laughing and being made a little stronger.  Brene Brown talks about this idea in her book, The Gifts of Imperfection, when she describes how being vulnerable creates real relationships and conquers shame.

I would like to see dads who listen to moms when they say, “I think there is something going on with our child and I want to have them assessed by a pediatrician.”  I would like to see moms who say, “I can see you are grocery shopping with a child who struggles in busy stores, I get that and you are rocking this.”  I would love it if I could see friends be honest with each other and say, “I can see that your child is showing some autistic traits, you need to talk to someone about it and have your child assessed.  It does not mean you have done anything wrong, there is nothing wrong with getting support, and I will be here to go through it with you.”

Line up of stuffed animals and toys on a couch. They are happy toys, ready for the day’s events.

I am trying to work all of these ideas together into some sort of presentation I can give to parents of autistic children or even parents in general in my hometown.  I don’t know how to go about it.  Ideas are welcome.  I want to help parents move past shame and fear, get the point that disability and differences aren’t things that change the value of our children.  Parents need to have that point so that we can teach it to our children.  I want Jake to know that being autistic is nothing bad, it’s part of his character, his struggle, that makes him who he is.  I want him to be able to ask for support and be himself without being ashamed or judged.

 

On Teaching and Encouraging Acceptance, Not Judgment

Parents of disabled children have to make a lot of choices.  Choices like whether to take your kids out to the playground or to a Strong Start class, or whether to attempt preschool with your child who is atypical, are serious, heavy questions that require much consideration.  It’s a scary thing, to be that parent, to be watching your child like a hawk, to see if they are going to bolt, racing across the grass, straight towards the road, eyes on some speck in the sky or a truck in a parking lot down the road.  To watch them, waiting for that moment when they shove another child who didn’t realize they were in the way of an inexplicable game that is known only to one, or for those tears to fall when that nice orderly lineup of pebbles is upset when some toddler meanders through it.  You watch, to see if your child notices others, if they want to join in a game, if they need space, quiet, shade, a safe refuge, if they are becoming ashamed or nervous, or if they are courageous and actually enjoying themselves.

And on top of that, you wonder about the other parents.  What will they think when my son runs away screaming.  Will they think I can’t control him?  I can’t.  Will they even realize I’m his parent?  What will they say when he pushes their princess off the play structure?  Clearly, that’s not okay, but what do they think?  What should I say when my friends, kindly, say, gee, he sure does keep you busy.  Or worse, when a strange dad snaps at me: “Teach him some manners!”

These things have all happened to me with Jake.  Every one of them.

But not today.  Today I took all three of my kids to the playground.  They had a great time.  Jake went down the slide three times with Penny, holding her hand, side-by-side.  They both loved it.  He climbed the structure and watched out for everyone else.  He always knew exactly where Penny and Aiden were.  He watched some older kids come and start a game of grounders.  I could see that he really wanted to join in, but he didn’t say anything to them.  After a while of playing around them, he moved on and played with his almost two-year-old sister.  It was a great day.

I watched.  The same as always.

I saw another little boy come up to the playground with his dad.  He was wearing a teddy bear back-pack/leash that I would totally have judged as terrible before I had children.  He seemed to like it.  Once they got up to the playground his dad unhooked the leash and off he went.  On tiptoe.  Through the gravel.  Then once he reached the shade, he just sat down and started playing with the pebbles.  None of the other kids gave him a second glance.  No one came over and said hi.  No one was at all bothered by him.

I smiled at his dad.

My son is almost seven.  This little boy looked to be about three.  I wanted to go say something.  Like, hi.  Looks like you are doing awesome.  I’m so glad you brought your son to the playground.  Would you like me to introduce him to Aiden and Jake?

I could not figure out what to say without sounding or feeling totally awkward.  But I have been thinking about it all day since.

The internet is really wonderful.  Without it I would feel quite isolated, I think, in the autism world.  I have read extensively online and found it incredibly valuable.  However, the lightning fast spread of ideas has also been hurtful.  Recently there have been terrible tragedies where young children have died or been injured in incredibly unusual circumstances, and the reaction online has been so harsh, judgmental, and hateful.  There have been neighbours who have called in authorities when children are playing in their own backyard.  People are so quick to turn on each other, to call out the faults in each other’s parenting.  It has led to a culture of fear in parenting.  It has led to second-guessing and doubting my instincts.

I don’t even know how to say hi to a stranger in a park.

We have this ideal of what parenting should look like.  What children should look like and play like.  We have averages and standards and graphs and handouts suggesting strategies.  It all adds up to feelings of inadequacy and striving to meet that ideal of normal.

And then something comes along and stirs it all up like an autism diagnosis in the family.

All of the research and money and support says: here are ways to help your autistic child strive to appear normal.  Best results if you do all the work yourself.  Best results if you put in 40 or more hours a week before they reach age five.  Then, you might be able to pass off your child as typical by the time they reach high school.  You might be able to hope and dream for them to achieve a position on a sports team, or a date for the prom.  Maybe one day they might get employment.  The whole world will cheer for them then when you share it online.  Don’t think past that.

This is very harmful thinking.

It creates impossible standards.  Which lead to failure, which leads to depression, self-loathing, and anxiety.  And that is just thinking selfishly about the parent.  On a child with autism, this creates a pressure to conform.  A pressure to live up to the insane effort mom and dad are putting in, to not let us down, to learn to pass as normal so that we can be proud of you.

As if losing what makes you autistic is what you need to do to be loved.

Now, I know those ideas seem exaggerated and that regular people think that they don’t actually do that, they are not actually perpetuating that, and being unique and individual is okay.  But what about that dad who snapped at me at the playground years ago? What about my friends, who don’t have any idea what to say or do with me when I “meet” them at a playground and spend an hour chasing my son away from the road?

It’s complicated.  While I get that safety is the most important, we need to change the way we respond to people.  We need to change the way we create safe places.  We need to change the way we react to other people and their kids.  We need to fence our playgrounds already.

I want to teach my kids to reach out to and play with other kids who appear different.  I really wish I had said something to them today, like, look Aiden.  That little boy likes playing with rocks.  Why don’t you go play with him?  I want to teach my kids to notice when someone clearly wishes to join in the game.  So kids like Jake don’t have to spend 15 minutes trying to figure out how to get involved only to give up.

As a response to the racial tensions in the USA, I saw a meme of two children playing.  One was white and one black, and it read, Children will play with anyone until someone tells them not to.  The truth of it struck me deeply, but I can see how it applies not only to racism but to ableism as well.  Somehow, we teach our children to judge, to fear, and to avoid that which is different from themselves.  They learn it from their parents and other adults.

Here in our house we are working on trying to avoid calling each other names.  Jake recently has called Aiden, smelly, stupid, fat, dumb, and various other insults.  We are really trying to explain that those names mean things that are not okay.  That we don’t think about other people in those negative terms.  If we are angry, we can say, I’m mad at you!  Or I don’t want to play!  When I was little I remember using the r-word regularly.  Times have changed, and I feel that to say someone is dumb or stupid is just about as terrible.  My kids are going to learn that intelligence is varied, people are varied, abilities are varied, and that everyone is valuable and worthy of friendship.

 

Autism, June and the Spoon Theory

Several months ago I read about the Spoon Theory, and it made sense to me. Lately, however, it has become clear that it is vitally important that I deeply understand and respect it. Jake is living with a set number of spoons that need to be carefully managed to avoid falling apart.The Spoon Theory was described by Christine Miserandino on butyoudontlooksick.com as a way to help her friends understand how she is living with a chronic illness. It describes how the energy you have for the day with a limited number of spoons. Each activity and interaction you encounter in a day uses up or requires a spoon or two for payment.  

For example, you start the day with 15 spoons. You get dressed, that takes a spoon. You eat breakfast, that takes a spoon, and you brush your teeth. Three spoons gone before you leave for school. Then you socialize with classmates before class, one spoon, follow the teacher’s instructions for the day, 5 spoons, and so on. I imagine that Jake uses about 12 spoons before he gets home from school. It seems that for many autistic people 12 is the standard of all they get. I figure maybe he gets more because he is so young and energetic. Once you are out of spoons you are out, there are no more that day.

I have read from other writers who have expanded this theory to describe how going through particularly stressful appointments or days lead them to “borrow” spoons from the next day, leaving them extra drained and weak. People have described being without spoons leading them to spend the day in bed, to be irritable, to lead to meltdowns or shutdowns, or overwhelming exhaustion.

I get it. It’s a great metaphor. I think anyone can relate. The difference is that I can recharge with some downtime, some prayer time, or even food. I can take a deep breath, sit alone for 15 minutes, and get back to parenting. And I’m pretty sure I have more than 15 spoons a day to work with. I probably truly have at least double that if I am seriously considering.  

Recently, I have noticed that I need to keep track of Jake’s spoons. I need to create downtime for him. I need to allow space for him to rest and not use any spoons. I need to recognize what things cost more spoons for him. For example, he has told me that Monday morning assemblies at school are hard for him because there are so many people there. The whole school, actually. Okay, so he has been going to these assemblies all year. I need to be aware and make sure that Monday mornings don’t require extra spoons and that Monday evenings are easy on him.

Likewise, I need to pay attention to what he wants to spend his spoons on. He has taken an interest in playing baseball lately. He is just developing his skills.  But he wants to play and he wants to try. Baseball is really, really not an independent play sport, though. I need to toss the ball with him. I need to clear my brain and my schedule to make time for that instead of what I would otherwise wish to get done.

As the school year is ending, Jake is exhausted. Wiped out. I can’t get him into bed early enough, and he wakes up still tired. He is low on spoons. In my wisdom, trying to save money on very pricey gluten free bread that we eat a loaf of every two days, I made smoothies for the kids for breakfast one morning last week. You would have thought it was worms in brussels sprouts blended in a cup instead of strawberry cream deliciousness. They hated it. They cried. They argued. They screamed. They refused. They tasted and declared it disgusting. Jake took an hour to drink about three sips. By the end of this misadventure, I was exhausted. They were a mess. Jake was starving and trying so hard, and he just could not drink it. Frustrating does not seem a strong enough word.

In retrospect, bringing in a new food in June, when he is already low on spoons, is a bad idea. He could learn to love smoothies, I am sure, if he was rested and there were no demands on him that he knew he had to face that day. The pressure was just too much. He had to drink a breakfast that he was unfamiliar with on a school day when he was going to have to go be around people, pay attention, and follow rules all day. The meltdown was pretty epic. I also felt like melting down. But I am the adult, the neurotypical, the mom. So I stuffed down those tears and promised myself that one day, far, far in the future, it would be a story that makes me laugh instead of cry.

I have been working very hard on a visual schedule for this summer. It’s my hope that if I put a lot of effort into preparing it well, I will be able to use it regularly and for a long time without a lot of effort daily. I want using it to become routine. I’m digging into my teacher mode to make our home less stressful and a place that requires fewer spoons. I am realizing, as I do this, that I need to schedule down time daily for Jake, and also weekly. I need to be able to tell my friends, no, today is not beach day, perhaps you could join us at the playground instead. This goes against my flexible and social nature but does appeal to my love of organization.

I was reflecting with my sister today that while I could say that I want to learn to be able to say no, what I really need to do is own my yeses and my nos. I need to be clear about my priorities (Jake, Aiden, and Penny, and the sanity of my household) and pick what I want to do based on that. So what I need to be is okay with saying no. I do it, but then I have guilt and try to make up for it. I’m also trying to own the things I say yes to. Because usually I say yes because I feel like I should. And no to what I really want. That seems a little confusing.  

The idea is, routine, simplification, and being picky will bless my family more that spontaneity or extra social time in the summer. Not that we can’t be social, I just have to watch the spoons and the routines and make sure Jake can handle it. I need to embrace that, remember my motivation, and own it.

If you are one of those people who gets some of our spoons this summer, the best part is, you have read this and know how treasured and expensive those spoons are. You will be understanding if Jake needs time alone or to rest, and you will appreciate the time we have together. That is the biggest beauty and meaning of the Spoon Theory. It brings people into what someone with autism or chronic illness is going through and builds compassion, understanding, and appreciation of the time you have together.

Pity Party

  

Yoda driving a speeder of Jake’s creation

  
It’s not fair. It’s not fair that my autistic kid doesn’t understand the difference between squirting the adults with water guns and dumping a bucket of water on his uncle’s lap and therefore phone. But even more than that, it’s not fair that when it sprays back on him he gets totally overwhelmed and overreacts. He ends up enraged, embarrassed, and confused about what went wrong. That’s not fair.

I want to hold him and comfort him and explain to him what went wrong. I want it to make sense and for him to be brave enough to try to squirt his uncle again. I want him to have fun and have it not be complicated by autism. I see his struggles and it is so hard for me. I just love him so much. He’s so amazing. It’s not fair.

I get sad sometimes. I get sad when I see him sad or angry. Boy, was he angry. He told his uncle, “I don’t want you to come to my sixth birthday, or my seventh. You can come to my eighth, but I will frown at you every time I see you!” Adorable, hilarious, and furious. It makes my heart hurt. I hate it when he loses control and feels like the world is wrong.  

It’s not fair.

It’s also not fair that he can’t keep his hands off of me when we are next to each other. He loves me so much. It’s so sweet, and so full of love and heart. It is too much, however, when I am trying to eat, or feed Penny. It’s too much, when he crawls under my skirt in the church foyer. He can hardly handle me touching him, and my hugs are so gentle, but he is all over me.  

It feels like a weight, like a heavy burden that he carries. Being autistic, being overwhelmed, being stressed, being strung out with adrenaline all of the day. It is heavy on my heart. I feel so guilty, for all the times I didn’t know he was autistic and I reacted poorly or too severely to his meltdowns. I wish I had known sooner, that I could have understood more sooner. I know I would have handled things differently. I just did my best, but it really wasn’t good enough.

Okay, pity party over. I will be stronger. I will be kinder. I will be smarter. I will be what he needs. I will figure this out.

The Sounds of Summer

The view from our seats at Safeco Field where we successfully took three children to their first Major League Baseball game.  Go Blue Jays.

Okay. So next summer, I need to remember to set my sights even lower. For some reason, I figured that all of the amazing growth, the incredible year we had in kindergarten, would just continue into and throughout summer. I was not completely mistaken, but I had forgotten just how busy life in summer can be.

And this year there were three of them.

Penny is learning to walk. She still scoots rather than crawls around on the floor, quite effectively and happily. But now she is also pulling up on everything and working on walking while leaning or holding onto whatever is nearby. It won’t be long now.

She is also learning how to talk. This is amazing, and she mimics sounds that she hears as well as trying to make her own sounds for things. The boys were never this vocal as babies. She said “Mum,” for hours the other day, and is very close to da-da. It’s so fun, so special.

And oh my goodness. It’s so loud.

Apparently she has learned that talking is loud.

We are so loud.

Jake is loud. He has no volume control despite years of us trying to coach him to be quieter, softer, use his indoor voice, turn down the volume, etc. He just can’t help it. Now we know that he has auditory sensory processing issues, he hears everything at the same volume, and he can’t hear the difference in his own voice. So he’s loud. Okay. He’s loud and autistic.

Aiden is loud. Aiden was not always loud. And certainly, in a crowd he’s often almost silent. But here at home, that kid is loud. He wakes up loud. He plays loud. When he’s happy or excited, he shrieks and screams.

I get it. Kids can be noisy. And kids can be loud. I love happy sounds.

We are loud happy.

We are also loud angry.

And loud tired. And loud hungry. Loud when we are trying to have a conversation and our kids are loud. Oh. My poor husband. He isn’t loud by nature. He’s quiet. If anything, he hears too clearly, too sensitively. Sometimes even he is loud.

And so, Penny is getting loud. She really just thinks that is how it is done. And I guess, in our family, it is.

So here we are, all together, the five of us, for the whole summer.  The noise is a little insane sometimes. Okay, so the noise is a little insane almost all the time. I wasn’t prepared.  How do you prepare for that?  Try to take more two minute quiet breaks?  Try to store up peaceful thoughts to prevent joining in with the screaming?  I am naturally loud, I know, and I want to help bring down this noise. It’s difficult.

I whisper, hoping they come down to my level. I yell, hoping to show them how loud they are, or how loud I too can be. I use body language. Well, that’s just useless.  

Maybe I need more signs that I can hold up. Something like a red light, green light, only I would only ever use the red light. I’d be waving my red light around, hoping the kids would pay attention and remember that it means they need to quiet down. Right.

I am so looking forward to the start of school. I need the quiet. Summer is nuts!  I know my dear husband can’t wait to get back to his classroom full of teenagers, because there they are quieter than here!  So funny.  

I am trying to live in this moment.  Love this noise and these kids and this insanity without wishing it were calmer, quieter, or September. I’m doing alright at it, most days. But I have found that my calm and my presence in the moment is short lived. I need to work on it so I can stay here and enjoy it, even when it drags on and on and on.

Halfway Through Summer

It is half way through the summer.  I feel like I have hit a patch of burn out.   I don’t have the enthusiasm I did at the beginning of the summer and September and school still seem a long way off.  I have found this summer that I have not had time to read, energy to research, or rest.  I have been on the job, as it is, 24/7, with break time being from about 8:00pm until I fall over and sleep sometime between ten and eleven.  That feels like a really small break time, and although it is break time, it’s also the only time I have to spend with my husband, or to accomplish anything I want to do.

Having three kids home all day means that I can get the laundry in the washer, and sometimes in the dryer, but I can’t fold it.  I can grocery shop or prepare dinner, but I can’t usually do both.  I can clear the counters or the table, but only if the TV is on, and it lasts for about five minutes before the empty spaces are filled again with markers or Lego.

Penny naps well.  But Aiden and Jake play loudly so sometimes they wake her up.  About once a week they hit a real stride where they can play for an hour or more together, without me.  The rest of the days, I have to be a part of their activities, either directly playing with them, or refereeing.  The noise in the house is numbing.

I took both of the boys to a friend’s house today and left them there.  That is how I can write.  It is so quiet here.  It was quiet there too.  Whenever he is somewhere else, or someone else is with us at our house, he is quieter.  I don’t know if he is thinking more, or shy, or less comfortable, or what exactly it is.  But it leaves me feeling like no one else really knows how much he talks or how constant the noise is.  I have been texting conversations with my husband, and it is better than nothing, but feels frustrating to be able to make eye contact and not hear the words each other says.

elaborate Lego creation

I feel like I’ve lost my momentum, lost my groove.  Life is harder again and I am tired again.  I want to be patient, not just give up.  They both look similar, but have such a different heart.  I want to be able to pour my heart into my kids and my family, not just survive the days.

I wish I was writing more, but I have not had the energy, time, or clear enough mind to come up with much insightful.  I do hope that the kids and my husband are getting rest, enjoying the time together and the endlessness of free summer days.  I so hope that they are able to feel like this is a wonderful season.  That would make me believe I was accomplishing something, just by allowing their happiness.

Fever!

Well.  The last six weeks have been insanity here.  It is the end of the school year.  My husband is a teacher at the local high school, and we are used to June craziness.  It’s always hard.  This year, I wasn’t teaching, but Jake was finishing kindergarten.  We had four field trips, (which I volunteered to help with, a dream come true!) class parties, and of course, sick kids.

Jake gets a fever when he is stressed.  Or overtired.  It is miserable and predicable.  My husband, mother and I have all caught the pattern.  He missed 26 days of school this year.  Of those, 1 was for a family trip, 7 were medical appointments or fun days off, and the rest were due to the fevers.  That is a lot of fevers.

They almost always come along on a Friday.  That brings the lovely addition of ruining any fun plans we had for the weekend.  Jake gets miserable, lethargic, whiney, and very snuggly.  The snuggles and sweet lovey conversations are the best part.  But I hate seeing him so sick, with no other symptoms.  He loses his appetite and we go through bottles of Tylenol and Advil.  We have had so many fevers this year that I have started keeping a ‘fever journal’ to show the pediatrician when we see her next.

I wonder about Celiac disease, and I am looking into the gluten free/casein free diet.  I picked up a recipe book from the library yesterday, and it said this in the introduction:

“A short time later, Eric started to respond to the diet… Eric’s mysterious fevers disappeared.” (The Autism Cookbook: 101 Gluten-Free and Dairy-Free Recipes by Susan K. Delaine and Peter J. Bauth)

Of course, I have Googled ‘autism and fever,’ and I did learn some interesting things.  There is a medically documented correlation between fever and improvement of autistic symptoms.  There are enough parents who have noticed their autistic kids improve when they have a fever that it has been studied, documented, and put through scientific and statistical analysis.

A study discussed in Time magazine found the following:

The brain region that drew the attention of the authors is known as the locus coeruleus, a small knot of neurons located in the brain stem. Not a lot of high-order processing goes on so deep in the brain’s basement, but the locus coeruleus does govern the release of the neurotransmitter noradrenaline, which is critical in triggering arousal or alarm, as in the famed fight-or-flight response. Arousal also plays a role in our ability to pay attention — you can’t deal with the lion trying to eat you, after all, if you don’t focus on it first. And attention, in turn, plays a critical role in such complex functions as responding to environmental cues and smoothly switching your concentration from one task to another. Those are abilities kids with autism lack.

Certainly, many other parts of the brain govern concentration and attention, but the locus coeruleus does one other thing too: it regulates fever.

http://content.time.com/time/health/article/0,8599,1889436,00.html

While this is utterly fascinating to me, it does nothing to help me ease Jake’s fevers, or to prevent them.  I can see a connection to the noradrenaline and being over tired or stressed.  Perhaps the locus coeruleus is having trouble maintaining the high octane life and shuts down, resulting in a lack of noradrenaline and also, a fever.  That’s my personal hypothesis, however.

Aside from drugs, it seems the only thing I can do is to manage Jake’s stress levels better.  I will have to work harder to keep him relaxed, and work with him to learn some strategies he will actually be willing to use to lower his feelings of panic.  And I guess I will have to look into the diet with more conviction as well.

What (on God’s green earth) is there to say?

Alright, here we are, summer holidays.  Jake and Aiden are thrilled that school is over and they are facing an endless cycle of cartoons, play time, and trips to the beach.  It is my absolute favorite time of the year.  And yet, we are now four whole days in, and some patterns have already become painfully clear.

One of the hardest things that my husband and I faced last summer was Jake’s constant interruptions.  All of a sudden we were all home together, for the entire summer, and no one, NO ONE but Jake could speak.  We would go for hours, looking at each other, trying to start conversations and giving up.  We talked to him about interrupting.  We tried to model conversations.  We tried to walk into a different room for three minutes to quickly figure out who was grocery shopping and who was cooking dinner.  Nothing worked.  He followed us.  It was so hard.

We were relieved in knowing that we were getting help.  We had started having home visits from an energetic and encouraging family support worker.  While technically out of her usual cliental, she took us on as a favor to Jake’s soon to be kindergarten teacher. She arranged for our first visits with the occupational therapist and we felt so thankful to be getting help that somehow we survived.  But it was so hard.

This summer, my husband has a new iPod that he can text with.  He joked with me that we can just text each other all summer so that we can communicate while in the house with Jake.  As we laughed, we realized that this is an awesome idea.  It doesn’t deal with the actual problem, but it may save our sanity.

Jake has learned so much this year, and the interrupting was listed right away as one of the goals we wanted to make a priority with his behaviour consultant.  So they have been working on recognizing whether someone is ‘available’ for conversation.  It is getting better.  In the last four days, there have been many times when Jake started talking to me and asking for my attention and I responded, “I’m just not available right now, give me five minutes.”  I was busy doing something like cooking on the hot stove or keeping Penny from falling off of her change table, situations not obvious to Jake yet.  He has followed up with, “Mom, are you available now?  Now?  Now?”  So it is a work in progress.

His interruptions are varied, from chants that make no sense whatsoever, but seem musical in nature to demands for attention so that he can discuss the fine points of his newest Lego creations.  He mimics both music we have played and TV he has watched with great joy.  To this he adds his own ideas of what is important, a request for pretzels or to create a new sports playoff bracket.  None of it is bad, or really hard to deal with, the problem is just the constant nature of his verbose interruptions.

In two more days my husband joins us at home full time for summer.  I am hopeful, and praying for a smoother summer for all of us than last year.  Jake has learned much, and is also doing more independent play.  We still have a long way to go on the interrupting, however.  It’s one of the most difficult things about Jake’s autism for our family.  Aiden has started repeating, “I want to talk, I want to talk, I want to talk,” until we get Jake to be quiet enough to hear what Aiden has to say.  It’s cute, and heartbreaking.  I want everyone in this family to be heard, to know that they are valued, and to be able to listen to each other.