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

 

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.

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.

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.

Me time

Taking care of yourself is so important. As the primary caregiver of a child with emotional and behavioral issues, I need to step away for an hour or two every once in awhile to remember that I’m in here somewhere too. The guilt can be hard to overcome, impossible sometimes. I left last night and my home turned into a warzone. These attacks are usually saved just for me, most likely because I’m his safe spot. I’m the one that he can let all his true feeling show.  Last night it was Daddy.  Behaviors that my husband has never seen came out.  Kicking. Scratching. Chasing him through the house. Blocking doorways and hallways so my husband couldn’t pass. It left them both emotionally and psychically injured.

With the light of a new day here, I am looking at last night in a new way. Perhaps Rex is feeling more secure with Daddy. Perhaps Rex is finally able to let down his guard with his daddy. He beat me husband up last night and I’m wondering if that’s a sign of progress. Strange isn’t it?

We have struggled with bedtime for months now. It is an ebb and flow. Some nights are better than others. The last week has been perfect. Rex went to sleep. Stayed asleep.  Woke up happy in the morning. I don’t know why the change. I don’t know why he reverted back to fighting bedtime. I don’t know why the last 7 days went so well and I don’t know why last night was so bad. Even with all I know about my son, with all the books I’ve read and the experts I’ve talked to; there is just so much we don’t know.  But we know that we must keep on living and not just surviving. We know that we must provide the best life we can for our boys and we know that we must find time outside these four walls to take a break and a breath and relax and revitalize so that we can keep doing the best we can for Rex and all our little men.

A little faith and a diagnosis

There is lots of talk about getting a diagnosis for kids like Rex. Is it really necessary? What will it do for him? How will it help? For us, it wasn’t about getting a diagnosis; it was about getting help for him and for all of us.  As we left for yet another evaluation today, I began to reflect on how far we have traveled and how long the journey has been to get to where he is today.  I have kept much of this sheltered from those who know us, but I realize now that this must be given a voice. With that voice, there might be an answer for someone else and with answers comes hope.

Shortly after Rex turned 4, he had his first appointment with a therapist. His behavior had gotten progressively worrisome from ages 3 to 4, so we sought some help to manage his angry outburst.  6 months later, he saw his first psychiatrist after he had a complete raging hysterical breakdown and repeated over and over that he wished he was dead. It was the first time he threatened to kill me.  He was 4 years old when he was put on his first medication. Things got better for awhile.  The medication controlled the rage and we pushed aside thoughts of any other issues. We went through kindergarten without much struggle. Then the summer of 2012 came and life fell apart. Rex started first grade and things only got worse. We tried two other medications during this time, but nothing was helping. Our psychiatrist at the time refused to consider testing for mental disorders or autism. By this point I had educated myself on the mental illness and autism and I felt sure that Rex fell on the spectrum somewhere.

After 2 years with our first psychiatrist, we switched doctors.  Rex was almost 6 years old. Our new psychiatrist took one look at his file and our war-torn faces and jumped in the trenches with us. New medications were added. Old medications were taken away. Autism testing was at the front of his plan.  We drove 4 hours to the testing facility only to have them say our son was fine. (Another story entirely) They said there was some anxiety and potentially a mood disorder, but they didn’t even listen to me or his psychiatrist. I left in tears.

Through all of this, his behaviors got worse. His sensory issues were out of control. Our lives were in chaos. We asked for a re-evaluation and were told that they had put all re-evaluations on hold indefinitely.  We were on our own. We started occupational therapy for him ourselves, paying out of pocket since without a diagnosis, there would be no coverage. We learned what we could and did what we could to help him. We There was no one to really help us through his day to day struggles, so we had to learn on  our own through trial and error.

Then at 8:30 on a cold night in December, my phone rang. Our insurance had started doing re-evaluations again. And there was an opening for us the next week.  Another 4 hour drive and another full day of testing and we finally had a diagnosis of autism, but more importantly we finally had help. Almost 4 years after my first call for help, someone answered. That little box checked off on his medical chart was all our insurance needed to provide us with services to finally help Rex.

He has since had academic testing done as well as speech and occupational testing. He went in today for another round of evaluations to try and properly narrow down his autism so we can find the best solutions for him.

This journey has tried over and over to rob me of hope and over and over I find new and better doors opening where old and broken doors have closed. We now have a fantastic psychiatrist who has never given up on us. He calls Rex his Little Buddy and truly cares about the entire family. We have a bunch of amazing ABA (Applied Behavior Analysis) tutors who come to our home for 6 hours a day, 3 times a week.  We have a charter school for Rex now that has fully embraced his uniqueness and wants to see him reach his potential, whatever that may be. It has taken us over 4 years to get here. I know that there are doors that will slam shut on us again and I know that there will be those who try to steal our hope as we continue living this life. I also know that new doors will open full of warmth and acceptance. All it takes is a little faith.