Friday, October 23, 2015



MORE 

Autism to me and our family is a condition of more, not less. I’ve hear the expression that Autism is different, not less. But I would like to see a change in view. Autism is More. At our house, so many of our meltdowns are from Rex seeing/hearing/feeling/doing/needing MORE from his life than a neurotypical 8 year old. He sees everything when his eyes are open, that’s why he closes them. He hears every word that is said, every noise that is made around him. He hears them louder and clearer than we do. So he covers his ears. Retreats to a quiet hiding place and screams to drown out all that sound. He feels the slightest brush of the wind and the smallest of temperature change. That’s why he climbs under the softest blanket and pulls it up to his chin. His body does more; it moves more and talks more to process all those sensations coming from every direction. And yes, he needs more. He needs more patience, more time, more calm, more peace, more understanding than an average child his age. He has been in my life for 8 years now and I am just starting to understand how he works and it’s been a disadvantage and a disservice to us all that we just understanding that he is MORE.

I wrote this in April of last year, 2014, and still these words are true. I am still learning to understand his More and learning how to help our family navigate and live these words. 

-Rebecca Dyck
 

Friday, January 30, 2015

Mismatched Socks

I wanted some new socks. I love socks. They are one of my favorite things. I've had a collection of fun socks for years. Socks for every season and holiday. They come in all colors and sizes and textures. You know what you are getting when you buy a pair of socks. Two matching socks that will keep your feet warm and make you smile.So I bought my socks and took them home. I washed them and folded them and made sure they were kept together. I wore them and showed them off. I loved my new socks. They were exactly what I was expecting.

One day I opened my sock drawer to get out my favorite socks, but I could only find one sock. The matching sock was not there. I looked in all the other drawers. I looked under the dresser. I looked in the closet, in the washer, in the dryer, in all the other rooms, in all the other drawers. I looked behind the washer, behind the dryer, in the trash. I tore the house apart looking for that darn sock. It was gone. It was like it had never been there before.

I didn't give up. I searched for days, for weeks even, looking for that sock. I had no joy and could see no happiness in having "just ONE" sock, There were supposed to be two. I bought two. What would people say when they saw me wearing only one sock or worse,  two socks that didn't match? But no matter how hard I looked, the second sock was gone. I had to accept the fact that my sock was gone. And after all, I did still have that one sock left. That sock still made me smile. It was still colorful and fun. It was just different now because I had to put a different sock on the other foot.

So I did. I wore mismatched socks. At first I wore them because it was the only way I could wear my favorite sock. And them something happened. I discovered that there was a new and different kind of joy in wearing mismatched socks. I stopped worrying so much about what people would say and I embraced my crazy, colorful and unexpected socks.


That's the story of our life with Rex. A life with where things are mismatched everyday. A life where plans and hopes and dreams and expectations change without us knowing, whether we want them to or not. In all that hardship, there are still moments of joy and fun and silly. There are moments where we all laugh until our cheeks hurt. And there's a freedom in letting go of what was expected and embracing what IS.

So come on over to our house. Show off your own mismatched socks. We won't judge. As we say over here, "Life's too short for matching socks"!

-R.D.

Tuesday, December 23, 2014

It's The Most Wonderful Time of the Year

That's what the song says right? Well, that may apply somewhere, but not to our house. Not since Rex entered this whole new world. November to February are the worst months for us. We get a good run from mid March to about Halloween and then you can see the stitching slowly start to unravel. It's usually something small, like forgetting basic things that I know he knows how to do, like pour milk in a cup or add 2 and 2 or spell his own last name. As the months progress, the self injurious behaviors increase and the ability to process incoming information and stimuli, fades. Little noises are suddenly very loud. Familiar places suddenly feel foreign. It was during this stretch of time last year that we took Rex to the ER for suicidal thoughts. It was in this four month time span that we were on the phone with his psychiatrist every day. 
This year seems to be a little better. He is a year older and it is easier to explain to him why we are not doing certain things this year.
 "Why aren't we going to the Christmas party this year mommy?"
"Do you remember how loud it was last year and what happened when we left?"
"Oh yeah. I screamed and cried in the truck the whole way home and then when we got home I think I hit you or hurt you. Right?"
"Right. So that's why we aren't going."
" But mommy, I think I can do it this year. I thin it will be ok. I can hold it all inside."
" I know you could do it and I know you could keep in inside, but what happens when we get home? Where does all that go?"
"It goes out everywhere and explodes and bad choices happen."
"That's why mommy doesn't want to push it. I know you can do it, but the little bit of fun isn't worth the outcome at home."
"Ok mommy. I understand. We can stay home."
Conversations like this are easier now. He can remember the last time and he doesn't want to repeat that again. I no longer fight back the tears while I'm trying to explain. I am coming to terms with this life. So my husband took the younger boys to the party and Rex and I stayed home. 

But at the same time, he may remember things like that, but he's forgetting things again. He asked me the other day what our family does to celebrate Christmas. I KNOW he knows this because he had just been talking to me about it. But in that moment, he honestly couldn't remember. 
I think back to his first Christmas. To this little boy: 

I remember that day so well. He was almost nine months old. I loved those little socks he was wearing and the photographer took so many adorable pictures of him. It was hard to choose which ones to buy. He smiled for the camera and laughed and giggled and then smiled some more. 
This is the picture I keep on my nightstand. This is the one I look at before I close my eyes at night. This is what I see after we have weathered yet another storm. This is the face I remember. The face full of promise and hope. The face with his whole future ahead of him. The perfect cheeks of a perfect baby boy. This is my reminder that the Rex of today is still the Rex in that picture from so many years ago. And maybe through his eyes, Rex can show me how to love this time of year as much as he does. Merry Christmas everyone!
-R.D.

A place of your own

So much has happened in our home over the past four months. We have been living in a construction nightmare full of noise and drywall dust and paint fumes. We have had to cancel our ABA therapy or move it to other locations.
On top of all this, we were dealt some harsh news that my father is battling cancer for the fifth time. We all fear that this may be the last trip around the sun for him. This has been especially hard for Rex. He associates himself with Grampa so much. I think if Rex understood the concept, he would say that Grampa is his hero. 
All this to say that our life has been chaos for months. Luckily, last week,the construction teams finally finished up and we have our house back again. During all of this time, I have been making sure that everyone else is taken care of, and when this happens I tend to neglect myself. I've read so many other blogs and articles that talk about taking time for yourself. Get away for a cup of coffee, read a book, take a five minute meditation break, wake up before everyone else and go for a run. These are all great ideas, but for lots of reasons, they just don't work in our home. But there is something that does work for us. 
Our bedroom. The room I share with my husband. When our youngest first got sick, I made it a priority to keep that room clean and decluttered and peaceful. Well all that had been lost. We no longer had that sanctuary that we could escape to at the end of a crazy day. Our room was full of piles of things taken from other rooms of the house during construction. So last weekend, my husband and I got our sanctuary back. It's nothing fancy. No great window looking out to the mountains or a balcony overlooking a lake. No big sitting area with oversized chairs. It's not a magazine photo shoot, and we don't want that. We want a room that speaks to us. A place we can escape to after the boys go to bed. A place that feels safe when the rest of the world and sometimes even the rest of the house doesn't. We have what we need. See look? 

Nothing fancy, but it is ours, kitty cat included. It's where my husband and I snuggle and watch movies. Usually he watches and I sleep. It's where I read at night if I can keep my eyes open. It helps me find peace. 
So this is my challenge to you. Take back your bedroom. Take it back from your kids. Take it back from your laundry. Take it back from the clutter. Make it yours. Make it a room that makes you smile when you walk in and makes you feel happy. Whether you have special needs kids, or typical kids, or no kids, or dog kids or cat kids. Sometimes it's just impossible to escape your house. Sometimes life is full of chaos, so we all deserve one room that isn't.  So what are you waitng for? Go!
- R.D.

Monday, December 22, 2014

The blessing of Fever

I know this will make no sense to you fever phobic parents who repeatedly take your child's temperature when they are ill.  The fear of fever, which has no medical basis, has been passed down to you from the older generation but is not based on science.   You repeatedly recheck your child's temperature, fearful as it gets closer some random number: 102, 103, 104?   If you really think about it, you aren't even sure what the number it is; you're just terrified something awful will happen when it gets to whatever "THAT" number is.    You call your doctors office in a panic, telling him you've been alternating Tylenol and Motrin in an attempt to keep the fever down, but it's NOT WORKING, your child still has a fever!  For some very strange reason, which you cannot understand, your once, rather rambunctious four year old is quietly resting on the couch!  He never does this, so you assume something MUST be wrong.   The Dr. reassures you he's fine, fever is the body's normal way of handling infection, he reminds you NOT to alternate medications, it's not necessary; let the body have it's way, let your child rest he says.

For those of you with typical children, it's hard for me to understand your panic, your worry over something like fever, which is calming your child down and allowing your child to rest and his body to heal.   It confuses me, why you aren't okay with letting them lay on the couch and relax.  Just let them sleep awhile.

My son rarely EVER calms down, in the past few weeks of him being manic, he's tried jumping out of our car while we were driving, he ran out into a busy street and he's thrown himself into tables, walls etc.  His body just couldn't slow down, no matter how hard he tried.  I watched him pacing and running night after night unable to stop touching things or even sit still.  In between episodes of physical inertia, he was mentally on edge, screaming at me if I said or did the wrong thing to set him off.

He came down with a fever last night, and to me fever is a blessing.  He laid down and had a sweet conversation with me, "can I have some water please Mommy?  Thank you Mommy, I love you with my whole heart Mommy, you are the best Mommy!"  He kissed me and I held his tired body in my arms.  I stroked his soft blond hair.  "Cuddle me Mommy."   I held my precious son, and I took a deep breath in, and we rested together, we settled in from the recent storm of emotional turmoil.  This fever quieted the monster that took my son from me for two weeks.

And again this is a mystery to me, what does fever do the brain, the emotions and the body; that temporarily calms the spectrum of Autistic, sensory,  and mentally ill people?   Why can't this power be harnessed for good?  

For now, I'll just enjoy my feverish boy.   While you worry about yours, I'll cuddle with mine.    I'll not be as afraid as I was a few days ago.   I'll sleep soundly all night knowing he'll be okay, that his mind and heart and body are resting.   I'll take in the blessing of fever and the peace it brings to my home.
-K.J.

 

Saturday, December 20, 2014

The Answers I feared

Yesterday I sat in a new psychiatrist's office.   The room was large, I sank into the couch, my notes in hand, so I wouldn't forget the details and highlights I've been tracking for the past 7 years.   My heart racing, a lump in my throat, my stomach like a pit. 

Earlier this week we experienced something we hadn't seen for a while.  Our little guy suddenly out of control, screaming, combative, throwing things.  This time there was a much different tone to his misery.  I'm used to him yelling at me, he say's the worst things his little mind can come up with "I hate you, butt head!  Your the worst mom in the world!  I wish you would die!  I wish I could kill you."    I've learned to separate myself and focus on trying to calm him down.  To take out the emotion I have to almost be robotic; to not feel anything in the moment, just try to keep myself and the other kids safe when he starts to hurl objects at me or run at me to kick or hit me.

This time was different.  This time he targeted himself.  He said "you hate me, I have to die."  We were just sitting there as a family watching a Christmas special.  Out of no were the emotion spewed forth.  He started to hit himself, than he threw himself into the edge of a table, I grabbed him before his head hit the corner.  He was thrashing about, screaming, "I want to die."   I had never seen this before and it shook me.

My husband and I had to restrain him for hours to keep him from running away or hurting himself.  My parents came over to watch the other children.  The on call Dr. told us to bring him to the hospital.  But I just couldn't do it.  I couldn't call the police to take my 7 year old son, I couldn't imagine them strapping him down and taking him away.  So we waited it out, we held him while he thrashed and screamed, until he was so tired he fell asleep. 

We've been waiting for the past several months, with no end in sight to try to get into a psychiatrist who takes our insurance.  After this episode I decided we could wait no longer.

I sat in the office recounting the details.  I explained that this wasn't the first time we've seen this kind of rage.  I explained that prior to this, many times prior, we've seen a similar pattern.   The teachers start calling, saying he was acting really "silly" at school, not focused (even yet on the Ritalin for his ADHD--as if it suddenly lost it's effectiveness).   They report a change in mood, with him being mean to the other students for no good reason.  I wasn't surprised because he was mean at home, defiant, overly confident, with no regard for authority.  The opposite of the sweet, kind hearted, good natured boy that I know.   I explained this revolving pattern of behavior.  It's as if one morning we wake to a different person entirely, one who fixes his hair differently, walks different, talks different, and has an air about him.  He listens to loud music and makes up his own rap songs about hurting people and doing bad things.  He draws pictures of scary things like zombies and dead people, he talks about doing dangerous, rebellious things like smoking and eating "gluten" --comically this it the most rebellious thing he can think of to do right now.

I know my son is in there somewhere, but I don't know when I'll see him again.   He bounces into the room while I'm talking, not able to keep his hands off of anything, running and touching, a nervous silly whimsical way about him, that seems lost.

"You've know what this is all this time, haven't you?"  The Dr. asks me.   "I'm so sorry, for all you've been through, that others didn't hear you, that they didn't see."  He say's he's angry for me.  Angry for the misdiagnosis of JUST ADHD, sensory processing, the wasted years and time on things that weren't helping him, the medications he's on now that might be making him worse.

I thank him and run after my son, who is somewhere in wonderland.   My husband lags behind while the Dr. explains to my husband that our son has Juvenile Onset Bipolar.   The lump in my throat thickens, I let the truth set in, but I can't think about it to hard, it hurts too much.  
-K.J.


 

Tuesday, November 4, 2014

How much is too much

I often struggle with how much to share about our lives. I want to be honest and open with you because it is that openness that really helps when you're buried in the trenches of your own battle. Yet I worry that the words aren't enough, the the weight of them isn't fully conveyed. In the end, I think that more is better than less. It is our truth after all.
I was just saying the other day how we have enjoyed a nice stretch of peace. No screaming or hurting. Bedtime has been quiet and uneventful. But these periods never last. We have a good month followed by a bad stretch. I never know how long they will last or what behaviors we will see, but it always comes. It's a reality that is hard to face. Rex's struggles are there all the time. Sometimes they are just hidden.
The time change was this weekend and it has caused chaos in our home again. It's not so much that he's not sleeping or waking up earlier, it's something else entirely. It's like the change in light and time has effected him on a deeper level. His brain does not seem to be able to cope with it. It is after all, a change in routine. The sun is not setting when it should and it's not rising when it should. We are now on the hyper end of things. He's running and bouncing and crawling and yelling and singing and moving nonstop. I can hear you now, saying, "So what's wrong with that? Sounds like a typical kid to me". 
And you'd be right, except he takes it to the extreme and then he can't stop. He can't reel it back in when he's had enough. So the only option is raging. All that energy with no place to properly store it, makes for a bad night. 
Even after all this time, there is nothing we can do,but ride out the storm once it starts. No matter how long of a peaceful stretch we may have had, one look from Rex is all it takes to put me right back into the adrenaline soaked fear. I know what's coming and I know I am powerless to stop it. 
I have a routine I go to in these moments. I pull my hair back out of my face, I take off all my jewelry: necklaces, earrings, rings. I change into clothes that allow for better movement and don't have cords or ties. I eliminate all things that can be pulled on or ripped out. I am gearing up for battle. I am gearing up for battle with my son, with an eight year old boy. In those moments he is not my son. He does not sound or look,like my little boy. But I know he is my little boy all the same. We ride out the rage together. We talk about it calmly the next day. And we both hope it doesn't happen again tonight.