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.

Sand and Waves

 

Last week we went to the beach. It has always been a place that I find peace. Rex used to love going down to the beach and playing in the sand. But things changes and one of those was his desire to go outside. He hated the wind and the sun. It was always too cold or too hot. Our little guy loved to spend time outside, but by the time he was 4, we couldn’t get him to voluntarily go outside. So we would go to the ocean and watch from a distance. We never went down to the beach anymore.

But last week was different. He wanted to go play in the ocean. So we made the walk down to the water. No swimsuits. No towels. Just a bucket for shells and a very skeptical mommy.  Rex trailed behind as Woody, 6, and Buzz, 5, ran on ahead. Then the sand turned cool from the water and Rex’s face lit up. He didn’t run, he flew into the water. No fear. No hesitation. He jumped right into the freezing Pacific Ocean.  And he smiled. He laughed. He giggled. He grabbed Woody’s hand and pulled him into the waves too. Rex does not initiate play with his younger brothers. He prefers to stay on the sidelines as they play. But not today. Hand in hand Rex and Woody jumped the waves and laughed and splashed. And when Rex turned around, I saw my boy behind the autism smiling back at me.

I read somewhere about writing your worries in the sand and watching as the waves washed them away. So I wrote autism in the sand and I wrote regression in the sand. The waves came up and washed those words away, just like they were doing for Rex out there in the surf. In those moments there was only joy and happiness. A half hour of pure childlike fun.  I cling to those memories, to that face looking back at me and smiling. It gives me strength in the times of darkness that have followed.  I am reminded that there will still be light in our lives, no matter how dark the night.

Isolation

Our family has the privilege of knowing two couples that are wonderful friends. We have known them forever, it seems.  They have known Rex since the beginning and they were here for the birth of our other two little dudes. Life has given them new opportunities and changes and now they are both several hours from us, in opposite directions.  When we were all in the same town, we shared everything together. They watched our kids, we have dinners and lunches and breakfasts together. They shared our dreams for the boys and our laughter and tears at watching little babies grow to be little men.

We have our own set of memories that we share, just with them. Rex, when he was two, watching Monsters Inc . with his eyes peaking through his hands saying, “Scary. Scary” and then giggling over and over again.  Coming home to Rex learning to do shots of orange juice on the kitchen floor and subsequently swallowing a penny. Taking them for ice cream and playing catch. Celebrating birthdays with cake and way too many presents.

These four people knew us before we had kids and they watched us grow from a young, naive couple of two into an older and maybe wiser family of five. Out of the six of us, we were the only ones with kids and they weren’t in a hurry to add any to the mix.  They knew Rex when he was a bright-eyed boy who laughed and giggled and loved to play outside. They knew Rex when he was a food adventurist and wanted to try anything and everything, including wasabi. They knew Rex when a trip to the store was just another fun outing.  They knew Rex when he knew how to tie his shoes. They knew Rex when he knew how to play with others. They knew Rex when he could carry on a back and forth conversation without struggle. They knew Rex when he could look you in the eye without turning away. They knew Rex before Autism changed him.

By the time Autism had begun to intertwine itself into Rex, our four friends had moved away.  They knew there were some struggles, but we kept the stories pretty low key.  They knew we were getting evaluations done for Autism, but they didn’t really understand why. We downplayed a lot of the behaviors and Rex worked really hard to keep them in and not let them show on the occasions where we did see them. He hates for people to see him lose control.

Somewhere in the midst of all this, I began to isolate myself. I shut my closest friends out of this part of my life. I didn’t want them to change their view of Rex. I wanted them to remember him the way he used to be, before he regressed. Before Autism took him away. I know they are there for me and would not turn me away if I called for a shoulder to lean on. But these are not words I want to share with them. I don’t want to tell them the horrors that sometimes take over our day. I don’t want to tell them about the kicking, punching, biting, spitting, slapping and screaming that happen when he rages. I don’t want to talk about how he can’t hug me like he used to anymore. I don’t want to tell them that he’s now terrified of heights and he can’t look at you for very long when he talks. And most of all, I don’t want to tell you that I know he’s still in there somewhere. That two year old little boy who could light up a room. The little man who was the life of the party. Every so often, he will look at me, really look at me, and I see the sparkle. I see the light that Autism took away. 

The change was so gradual. It wasn’t the night and day regression that you hear about with some kids. We thought it was a phase. We blamed a need to adjust after our third son was born. We lived in a life of denial for almost 2 years.  It wasn’t until a year and a half ago, that we knew there was so much more going on than just a phase.  The behaviors escalated. And the changes became more noticeable. 6 months ago, we finally got the official diagnosis of Autism.

My husband and I have gone through the stages of grief in accepting and learning to live this new life. Shock. Sadness, Anger. Denial. Loneliness. Acceptance.  We fluctuate through these emotions, sometimes daily. We miss the Rex that our friends knew. We hate to see our main man hurt so much. We get up every morning and face the same battle that we went to bed with the night before. And we have finally started to breathe the words, this is our new life.

But we haven’t been able to call our friends and tell them. We haven’t been able to ask for their help, for their support. We haven’t been able to put those emotions into words. We haven’t been able to go see them because the change in routine is too stressful on everyone.

Our wonderful friends have started looking at the idea of expanding their couple status to that of a family.  They are talking about having children of their own now.  I am genuinely happy for them, but I can’t help think of their relationship with Rex.  They shared dreams for him when he was little.  The same dreams that they are starting to create with the desire for their own family. I worry that Rex is a constant reminder of how quickly those dreams can be taken away.  This was not supposed to happen to our Rex.

Being here with him every day, I still find it hard to fully understand this different child I have now.  How can I expect them to understand him? Looking back, my path of isolation may not have been the best choice. I didn’t even realize I was making that choice. I was just trying to survive.

Rex is now 8 years old.  He will finish 2^nd grade this year here at home in our homeschool classroom. He has been diagnosed with High Functioning Autism, ADHD, Sensory Processing Disorder, Generalized Mood Disorder and possible Bipolar Disorder, and Dyslexia.  Now that he is older, the differences are much more noticeable as his younger brothers surpass him on multiple levels.  But Rex is a fighter. He was determined to learn to ride a bike with no training wheels. He may have been the last of the boys to do it, but he had a much higher mountain to climb.  The fear of getting on his bike was paralyzing. But he did it! Watching him ride down the street still brings up the emotion of the first time I saw him ride. Rex can tie his shoes now and button his shirts! These are huge feeling of accomplishment for him. All of these skills he lost as he regressed into Autism. But he was determined to get them back.

He loves to do arts and crafts and has mastered cutting with scissors. He loves to watch shows like Myth Busters and is crazy about Food Network.  He loves to learn the “how” and the “why” of the world. He brings a unique perspective to the world and makes me look at things in a different way. He loves to listen to me read to him.

We curl up before bed and I read to him. He lays there quietly taking in every word I say.  Every so often a steal a glance at his face, and in those moments, if I look just right, I can still see that sparkle in his eye.

He's Not Broken.

He’s not broken. He is 8 and he has Autism, but he’s not broken. He has SPD or Sensory Processing Disorder (Learn more here), but he’s not broken. He has ADHD, but he's not broken. He has Dyslexia, but he’s not broken. He may also have Bi-Polar Disorder, but he’s not broken.

I am not trying to fix my son. I do not believe any child needs to be fixed. Instead we need to help them reach their full potential, and that path is different for each child. There will be therapies involved and dietary changes and supplements. We are currently on that path, but I am not attempting to help my son fit into as neurotypical world. I am helping him to fit into his own skin. I want him to be confident within himself, be comfortable with his body and his thoughts, and trust that he has a rightful place in this world.  My job is not to make you feel comfortable when my son is in a grocery store. My job is to make my son feel comfortable in that same grocery store. You have to meet us in the middle.

When you ask my son how his day is, to you it is a generic way of saying hello. He does not see it that way. Instead he sees it as a fair question that deserves a full answer. Hopefully for you, we have arrived just after breakfast, so there hasn’t been too much activity in his day yet. But he will still tell you how breakfast went and that it’s a good day because he’s wearing his favorite T-Rex shirt and he likes the T-Rex because his nickname starts with T and his uncle gave him that nickname, and his other brothers have nicknames too and they are 6 and 4 and the 6 year old isn’t here right now because the 6 year old is in public school, but he is homeschooled and home school is good because he doesn’t get angry when he gets home, but he still gets angry sometimes and that’s ok because he’s working on it and he’s going to read a new book when he gets home and drink the new juice he just got and he has to go now because mommy says it’s time to leave.

And that makes you smile and giggle a little and even blush because you don’t know how to respond to this 8 year old boy who is pouring out the inner workings of his life to you. But to him he is simply answering a question. And, sure, we are working on learning the social cues of others and what things make other people uncomfortable. But I am not telling him that his response to your question was wrong. Only that it was different than what the asker expected. To tell him he is wrong is to risk squelching that openness an honesty that has been left behind by some many of us.

He believes he must do all things to the best of his ability. The problem lies in the fact that his brain and body are bogged down and hindering him from doing his best. We will work on healing his brain and strengthening his body, but we will never fix him. We cannot fix him because he is not broken. He may be different than you, do things different, say things different, react different, but those differences don’t mean he is broken. We will work tirelessly to help him reach his full potential, whatever that is, and to help him say the words, “I can” and to let him know that everyone in the world is different, but we will not fix him because he is not broken.

It Is Time

For a long time now I've struggled with how much to tell the world, to you, about our life. I was afraid to tell too much. I was afraid of what you might say. I was lost in my moment to moment struggle to survive the day.
Then the words of a friend said that maybe other people needed hope too. Maybe our words could help someone else just a little. Maybe another mom or dad was drowning in the invisible sea of mental illness and trying desperately to help their child too. As our words have helped each other, maybe they could help someone else.
So here we are now. Two moms who want to share the hope and strength we have found with each other. We don't have all the answers. Most days we are just struggling to make it from one moment to the next. But we know that struggle. We know the mental,  physical and emotional exhaustion. We know the strain it puts on relationships with spouses and friends and siblings. We know the isolation and the stigma that comes from have a child with special needs, with autism, with mental illness.
We have lived through both of our younger sons battling a horribly scary and debilitating autoimmune disorder called FPIES. Our boys survived and are thriving now. We thought we were done with the medical crisis and we thought our lives would show us normalcy. That was not to be the case. Instead, our lives were turned upside down and inside out. We are learning to re-navigate this life and we hope our words will help someone else too.