What I Wish the World knew about Autism Awareness Month

What I Wish the World knew about Autism Awareness Month...


We have been on the autism journey for just over four years. I remember it like yesterday, sitting at the appointment watching the doctor run a series of predictable tests, bitting my tongue and holding myself back from blurting out all I felt I needed to say. I watched her hand him toy after toy trying to see if he knew what to do with it (like give the toy bottle to the baby doll). And toy after toy he would throw it, or bite it, or break it. Needless to say I knew the answer she was going to give us before she said a word, as my husband and I sat in that office lined with toys. And yet I couldn't bring myself to accept that autism diagnosis. And not because I thought it was the end of the world, and not even because I thought that wasn't the right diagnosis, but because it all seemed too unknown. 'Your son has autism, here is a list of ABA therapies in town.' And that was literally it. I wanted a crystal ball, I wanted to hear that my son had autism but here is how it all turns out, just try this magic pill and he will be just fine. I even would have settled for hearing that things wouldn't turn out great. I just wanted to know. But then that is one of the hardest parts of being an autism parent, the unknown. Everyone is so different, after all autism is a spectrum.


I am a planner, the unknown is one of the hardest things for me. In the next few years that followed I kept being told how everything was going to be fine by everyone around me. You know the comments- 'my kid didn't talk at age 3 either but they are fine now', 'lots of kids do this or that, its normal', 'he doesn't look autistic'. I sat through preschool concerts watching every child sing and do the motions while mine sat in a corner covering his ears. I heard my friends kids start speaking, carrying on conversations, while my child had less then a handful of words. The list could go on. But I kept watching, waiting. And we were not passive, we had started Josh in ABA the day after his diagnosis, we had an IEP in place at school, he was doing every therapy available from speech to occupational therapy. But somehow it felt like we were stuck watching time just pass as Josh stood frozen in time.

Then a year ago, on the eve of his 6th birthday which also happens to be world autism day, my husband and I sat and talked. For the first time we were both honest about our fears. We talked about the future, we talked about what would happen when he is an adult, where would he live, what if he still can't speak? What if he never is able to hold a job? What about expenses? All the things we wished for and feared he may never have. It was earth shattering. It was painful. It was raw. It was honest. And for the first time we fully accepted that our son was autistic.

But like any story, it takes hitting rock bottom to create a realistic path forward. Suddenly success had a new measure. Our eyes shifted from playdates, recreational sports, and community activities to potty training, communication, safety and basic daily functioning. We let go of traditional public school and in its place found a wonderful full time ABA center (literally one of the hardest parenting decisions of my life, and the best one we ever made). We stopped trying to make Josh fit into our world and we as a family started creating a world that fit Josh. A year to the day later, on the eve of his 7th birthday and world autism day, I am sitting here reflecting.

In some ways nothing has changed, Josh still seems frozen in time. He still watches the same little kid shows, he still struggles to communicate, he still has high behaviors, he still struggles with everyday things, he still has high behaviors and safety risks. He has still not been to a birthday party, he still has never had a playdate, he has still never participated in a childhood sport, he still has many places he just cannot go or fit into in the community. But in other ways so much has changed. I have watching him accomplish tasks as simple as signing 'I need help', finally getting potty trained during the daytime, being able to sit and just be for short periods of time. They are small, and compared to his peers they are not even close to on target. But Josh is on his own path and he is making progress in his own special way. But he is happy, he is the most honest and content child I know. We as a family have a very restructured life, but we are happy. Now this doesn't mean I don't still worry, cry in a locked bathroom at night because my fears for the future get the better of me, sit up at midnight researching every supplement, diet change or treatment to be sure I am not missing anything.


For Josh the sky is the limit, he can and will accomplish unbelievable things. He is an amazing kid, and has my whole heart. But being able to accept where he is, while helping him work to keep making strides, has been life changing. Autism means different things for everyone affected. But for us autism is hard, it is painful, it is a loss of a normal childhood, it is a daily struggle. And that is ok. That may not be what autism always means for us, things change, progress is made. But if there is one piece of advice I could give any new parent on this journey it is that autism is whatever it means to you and your loved one, and that is ok. To me that is autism acceptance, accepting that it means different things to different people and that on both ends of the spectrum of acceptance it is ok and it is valid.

Finding the Answers

When Josh was 6 months old we started noticing symptoms that seemed off, only to be told it was nothing and not to worry about them. By 15 months issues had become more pronounced and the journey of seeking specialists opinions began. The next two years marked a frustrating phase of Josh having these terrible episodes that grew more severe every time. Some days he seemed completely normal, you would never know anything was wrong. This made for frustrating doctors trips because they would evaluate him and tell us how 'normal' he was, and that there was no such thing as being able to walk one day and not the next. We had doctors look at us like we were crazy, some even told us as much. And then there were the moments, the days where Josh's back would spasm so badly he couldn't move, or he had weakness of one side that looked like a stoke. Some days he had beautiful words and communication, the next he couldn't speak, and worse, had such poor processing he couldn't communicate at all.

                                       

Our days became marked by therapies, IEP meeting, and doctors appointments. Our house slowly began to fill with medical equipment and assistive devices. Soon we started having full time nursing in our lives, to ensure Josh had the care and support of the increasingly more frequent episodes. Just weeks after his 3rd birthday Josh had his most severe episode of dystonia that lead to full body paralysis and altered breathing. Several flight for life rides and hospital transfers later we found ourselves next to our unconscious, intubated little boy unsure what was causing this, and unsure if and when he would wake up. When Josh finally did wake up he had lost almost all his skills, his speech was gone, he couldn't walk, he wants potty trained anymore, he couldn't even eat and swallow anymore. Months of therapy followed to regain these skills, and slowly we started making achievements. These achievements were hard earned, only to be lost again every few months when another huge crisis happened again.

                                                                               

Every time a crisis happened I would find myself with an unconscious child in my arms, breathing only a few times a minute and heart rates in the 30s, standing in an emergency trauma room with a team of doctors asking me what Josh's diagnosis was. And I never had an answer...
I don't know if words could ever express the helpless feeling of watching your child progressively worsen, lose skills and go through these horrific episodes and I couldn't even tell the doctors what was wrong. Last summer the episode were so frequent and he would lose significant skills following each one. Medical issues that used to resolve outside of episodes now lingered and our list of specialists grew to almost 2 dozen. It became apparent that we needed an answer, we needed to figure out what was happening to our sweet boy if we wanted a chance at saving his life.

                                            
The hardest part was hoping for answers and having some of the most brilliant medical professionals in the country just baffled. Then this summer, while in the hospital for another crisis, I was sitting next to my unconscious child and had a long discussion with our amazing neurology doctor of several years. He said he had been doing some research and looking into a disease called Alternating Hemiplegia of Childhood (AHC). I took to social media and found a group of people with children or loved ones who had AHC. And then things sort of started falling into place for the first time. Through a process totally unplanned we ended up getting in with one of the topic specialists and researchers in the field of AHC. This week we traveled to North Carolina and met with this doctor. And for the first time we found ourselves being told that our child make complete sense, that every single symptom, episode and crisis were 'classic' systems. Words cannot do justice to what is was life after 6 years of searching to have an answer. It was overwhelming, and emotional and at the same time life a weight lifted. I remember a couple years ago having one of our specialists tell us that many parents think that finding the answers or diagnosis will make things better and that in the end it ends up not mattering. I think her point was valid, the answer doesn't change our reality, the answer doesn't 'fix' Josh or make the road ahead of us even one bit simpler. Josh will continue to have these episodes, our lives will be marked by this disease, and even with an answer it won't help to explain anything to ER or hospitals because it is so rare and not commonly understood. That being said, there is an odd peace to knowing. There is a comfort in having community now and knowing others that are walking the same road we are on. There is comfort in knowing that we aren't crazy and there is something that explains all Josh goes through.

We have a long road ahead of us, we have a very rare, and for right now, incurable disease. But we know what we are dealing with and for today that is huge for us. And as we are flying 35,000 feet back home, and I sit here reflecting on this journey I can't believe we are here. There was a time I thought we would never know. There was a time and moments we didn't know if Josh would make it or pull through. But here we are, still fighting. I have said it before but it couldn't be more true that through the heartache, frustration, unknowns and struggles I am truly blessed and honored to be on this journey with the strongest and most courageous child I know, my AHC champion, Josh.

                                                                                   

The Blessings of Autism

The topic of autism as a blessing is one I have given so much thought to since the very first time the doctor told us she suspected our child may be on the spectrum. Having a child with a disability effects every person and family so differently. But for me it has been a process, a journey with different phases of acceptance. It truly is the same process as any loss, one must travel through stages of denial, anger, grief, hope, despair... and sometimes all of those are in one single day! And with any life change, outside factors such as family and friend support, resources (very dependent on where one lives), and what else is going on in life play a part in this process.

For me, I was less than a year into the adjustment of adopting 3 brother in addition to our own two kids, a huge move, family stress, financial struggles and my own health issues. Needless to say I was not in the most ideal place for the heavy weight of an autism diagnosis, but really who ever is?? And three and a half years down the road I would be lying if I said I have processed all the emotions and everyday is sunshine and hope. I worry about the future, I worry about independence, I worry what will happen if I was not here for him, I worry about things I cannot control like medicaid and politics and decisions that would have huge impacts on his life. But even in the daily worry, I have started seeing the beauty too. My son is one of the most amazing people, even if I am biased in that opinion:). He fights harder than anyone I know, he is relentless and never gives up, he has un abandoned joy, he doesn't worry about what others think (I can't even begin to imagine how freeing that must be). He feels deeper than any child I know. He gives the best hugs. He loves his family and his brothers so much. He expresses happiness in the most raw and unfiltered way I have ever witnessed in this world, in a way I can only imagine we will all express true joy when then weight of this world is behind us. He is so silly and he loves to make people laugh. I could continue, the list is truly endless, but that is not for today's post.

But to say autism is a blessing is something I have always struggled with. It came to a head this week after multiple social media posts about the blessing of autism, or how we need to stop trying to 'fix' autism as it is not something wrong with people. And that is hard for me because of so many reason. Autism effects our family, it effects every aspect of life. But most of all, it makes every little think so hard for Josh. It means things like birthday parties, trips to the playground, school, friends and most other areas are stressful and a struggle for him.

Here is the problem, autism is a spectrum... it is literally as vast and different as pretending that you can sum up all blondes as the same because they have the same hair color. We all see the ludicrousness of that statement, every person regardless of hair color is so different. Well so is autism. We use the word spectrum, yet we often forget how very different the two ends of that are, and everywhere along the way. So to say that all parents of autistic children should view it the same and have the exact same feelings is likewise absurd. But I used to always think that those who viewed autism as a blessing had children on the higher end of the spectrum, and those who do not see it as a blessing had the children on the lower or more severe end of the spectrum. Now there may be some truth to this, lets face it if you are the parent of one of the TV's detection of someone with autism (who must be a certifiable genius with some quirks) sure you can see the blessing of how

Making a Sensory Friendly Bedroom

Making a sensory friendly room is easy and fun and so important. Researchers suggest that the bedroom should be a place where we feel peaceful and associate feelings of peace and comfort. This is the same reason why we, as adults, are told to not bring work into the bedroom, because our brains make connections from tense environments and it has very real effects on our ability to rest. 

A few months ago Josh started using his room to flew when he felt overwhelmed. This is a great thing when we think about it, we want our children to have that safe place to go to when the world is overwhelming. The problem was, his room was not a safe place. 

His room was full of medical equipment, electrical cords, and it was not a sensory friendly room. So I began my research. For weeks I thought up ideas on what to move, how to make the room safer, and how to make it a room that would be calming for my son. So here it is... Keep in mind these are all ideas and every person and child is different, so what works for one kid may not for another. What you see here is a lot of my son, grouping calming with what he loves. Enjoy...

1)  First, I needed to move all things with cords. When my son is overwhelmed he can throw things (things that break), so they needed to be out of reach. I put shelves up (out of reach), for all the items that have cords. For Josh those included his humidifier, a fan (he uses to sleep), a white noise machine (also for sleep), his essential oils diffuser, a lamp (with blue light bulb), video monitor and CD player. I used a cord cover to run an extension cord up the wall so he cannot pull anything down, and then plugged each item into that power cord. As far as the items the ones I wanted to point out were the fan, diffuser, white noise machine, and lamp. The fan really helps Josh sleep, he likes to be cooler and the air seems to help him relax. The white noise machine helps Josh sleep too, since children with autism tend to have trouble with sleep rhythms the white noise helps to maintain REM sleep. Josh uses a diffuser with Lavender, Breath, and a few wood oils that help with rest. Lastly, the lamp, all lights in Josh's room use a blue lightbulb, which also helps to facilitate sleep rhythms as well as promote calm feelings for children with ASD or SPD. 

BEFORE

AFTER

2) Next, I removed his writing desk and recliner. It made my heart a little sad because I feel like a writing desk is a right of passage, but for Josh it was taking up room and was just something to climb on.  Josh's dresser moved out and was replaced with under the bed bins. You will also note below that the curtains were changed out.

BEFORE

AFTER

3) Next, you will notice the blue walls, as many of us know blue is a very calming color. But to lighten it up I spray painted his cork boards to give some color to the room. The yellow is a calm color, that promotes enthusiasm and optimism.

4) The white ceiling had to go, white walls are actually very anxiety producing. So we went with a light blue and some clouds to get some lightness back in the room. 

AFTER

5) Creating a 'Crash' corner... It is very important for many kids with ASD or SPD to have the a place they can jump and crash. So the recliner was removed and in its place I got an oversized beanbag chair. This is perfect because he can jump, crash or jump into it when he just needs to get that movement out. He also can get more sensory input when sitting in the chair, since it puts pressure on all sides.

6) Back to the ceiling, in addition to the sky ceiling the light bulbs here were again changed out to blue lights. 

7) The curtains were a big change. These star curtains were from Amazon and are blackout curtains that actually have starts cut out to let little star shaped light in. Light is a big issue for children with ASD or SPD. Bright lights can be very overwhelming and hard to process, particularly if they are already having a hard time and needing to calm themselves. So blackout curtains are a must in our house. We had to remove the spider-man curtains because, cool as spidy is, it is very loud and not very calming. These curtains are plan grey with no colors, and the little light that comes in is very soft and lights the room just enough without having to open them for light. 

8) Again, a dresser is not always safe for kids with ASD or SPD since it can be climbed on. We open to remove most all furniture from the room, and if he did not need the hospital bed I actually would have preferred to have a mattress on the floor. But since there is a bed frame I put the clothes under the bed in place of the dresser. You will notice the spiderman weighted blanket which is helpful for sleep and sensory issues. I love ours, it has a very soft underside, with spiderman on the top. But it is not too loud or crazy busy. The other big change her is the bed sheets, we took away the characters and put some plan flannel sheets where are soft and more sensory friendly.

It definitely was a huge transformation, but from the furniture swaps to adding shelves, to so color changes, it truly made a huge difference. That being said, making your child's room sensory friendly does not have to be expensive. For the paint, curtains, bean bag chair, shelves, cord protector, bedsheets and tools I stayed under a $200 budget (half of which was the bean bag chair). So if you are looking for some quick easy tips...

• less furniture is better
• go with warm colors (blues, earthy greens, soft yellows)
• If in doubt, black it out... black out curtains are a life saver
• Go Blue... switching to blue lights is cheap and easy and make s big difference. 
• Think safety.. cords, outlets and other dangerous things need to be considered.
• Weighted blanket is worth its weight in gold...
• You can keep the kiddie fun (in our case super heroes), but less is more, keep it calm. 

So there you go... here is out transformation, hope it helps anyone needing ideas!!

Starting a New Chapter

Tomorrow starts a new chapter for Josh. Oh, he has been in ABA (applied behavioral therapy for children with autism) since he was three, but tomorrow he moves to a new center that is highly specialized in working with children with autism. It is also a new chapter because we will be attending full time and not returning to public school. 

The decision to pull Josh from his school was one I agonized, lost sleep, prayed about and deliberated over for months. Josh has a great school, a wonderful special education teacher and a team who care deeply about him. But in the end, Josh could not function at school. And I truly mean that, he was not able to manage school and the stress from school was contributing to his health issues. Josh lacks basic functioning and social skills that are needed to attend school. And while in theory special education programs are designed to help with this, Josh was just struggling too much. He couldn't get on the bus, he cried and screamed and was forced into the building. He cried, threw things and ran away once at school. He had finally reached a point where he actually ran out of the building several times and had to be physical restrained multiple times. He didn't understand what was expected of him, he couldn't communicate his needs, fears or feelings. And because negative behaviors where the only form of communication he had, they just continued to increase every day. Academics were not even on his to do list anymore, he reached a point where he went to school every day because he had to, but he didn't achieve much else there. And to make things worse, because his underlying medical issues are triggered by any stressors to his body, his health was taking a huge toll. 

So as the school year came to an end, the reality of needing to find a better solution for him was at the very front of my mind. And understand, it wasn't just that we needed to find a way to make school easier for him, it was the fact that he was failing at school because of his total inability to function in the world around him. And that was what needed to be addressed. He needed to learn how to dress himself, how to sit a table, how to hand up his backpack and jacket, how to follow directions, sit in a circle time, answer questions, raise his hand, ask for him, take a break, play with a peer. The list was too long and he had so much to learn, and now we had a list of negative behaviors that needed to be dealt with before anything else could even happen.  

Then we got the call.... the autism center for which he had been on the waitlist for over a year and a half had a seat available... but it was full day only (aka, he couldn't go to school and ABA, it was one or the other). And thus began the deliberation. And in case you read all the problems he had a school and think that should make the decision easy, let me tell you this was one of the hardest decisions of my life. Abandoning traditional school was a huge deal. Not to mention the emotional piece. Call it self-centered, but I took this hit hard. Most of the losses of traditional norms blow past me, but this one was not so easy. It meant admitting that not only does my child have a disability, he was so significant right now that he couldn't even attend school. It meant saying goodbye to class parties, first day of school photos, field trips and all the other fun stuff that comes from school. It was scary too because this is our 'last resort'. Meaning there is really nothing more 'intense' to try if this doesn't work, that is a scary though. It meant leaving his old ABA center where we were comfortable and knew everyone. And it meant starting over which forming relationships, advocating, informing others on all Josh's needs. But in the end I could deny that this center was the right place for Josh. 

So tomorrow starts a new chapter for Josh. His first day of full time ABA. I have so many wishes and desires for my sweet boy. I want him to thrive. I want him to be happy. I want him to feel safe and comfortable. I want him to learn to talk and make his needs know. I want him to make a friend one day. I want him to be able to wear clothes and shoes. I want him to learn how to sit at a desk. Oh the list could go on. But in the end I want him to thrive, to just make progress. Regardless how slow, regardless if it is all my goals and wishes, I want to see him move in the right direction to just living life to his fullest. So tonight I am taking it all in, I am allowing myself to acknowledge the perceived losses, the fears and hopes. And tomorrow we will do it up right. We will take his back to school photo, we will be excited and we will embrace all that this new chapter holds. Because Josh is one of the bravest fighters I know and if anyone can embrace this new path and rock it, it is him!!!

Let's Talk Church

Let's talk church... I have shared many times about the Access ministries our church has and how blessed we are by this. Josh cannot access Sunday school or church, let me say that again, he CAN NOT Access church! Not he has a hard time, not he gets a little hyper, he cannot access it! Even if he has a special person willing to walk the halls so we can attend church, he still is not accessing church or Sunday school, he is missing it because of his disability. We have schools who legally have to find a way for all children, regardless of ability level, can access the same schooling as every other child. We have shopping centers like target with special needs carts, we even have 6 flags theme parks that recognize the need and have strollers and sensory rooms. But at churches the best we can do is find a helper to keep him calm so WE can go to church. That is not good enough! Jesus called ALL the children to come to him, not to be entertained, not just he kids who can sit still and understand the prepared lesson. Josh needs to know Jesus, he is called to know Jesus as HIS savior. And however that lesson needs to be presented to him we need to find that and advocate for that! ALL children in ALL churches need to have access to God, to church, to the Sunday school classroom, and the lesson in a way they can understand and grasp. We are blessed. We have a church that understands and is passionate about that. But it is not the norm. And as a body of Christ we need to rise up and recognize this need and fight for these children and adults that cannot access their Lord through traditional church setting. Today josh doesn't have him helper (he is an Air Force cadet and gets to be home with his family for a few weeks, amazing godly young man serving our county and his Lord, I cannot be impressed enough with this young man)! So Josh and I get to sit on the floor in the back of the service, the only way he can handle this situation! But he is blessed, he can access his Father, and we need to become more passionate about this until ALL children can come to Jesus openly and without disabilities standing in their way!