Much Germs, So Yuck!

So the video is live, Alex has a bacterial infection surprise, surprise, because sickness always runs rampant in this house. Took him to the doctor who was AMAZING. This guy took the time to earn his trust. Alex even opened his mouth and showed his ears to him. He gave the doctor a hug at the end, which is not something he does with people. Affection is not his thing having ASD.

I’ve decided to switch doctors to the one we saw. He versed me better in the short visit with him than the two doctors I’ve seen in the last two years have. There is a lot going on with me but I will save that for another day. For now I’ll just say there may be some serious items on the horizon for me and my own health some of it having to do with my thyroid issues that cropped up in 2015 around Christmas for those of you that have been long time readers. That is never anything new though.

 

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But if you never try you’ll never know, Just what you’re worth

The other day some friends and I played a game. We listed off songs that we could listen to for the rest of our lives. One song only, forever. I of course had trouble choosing and ended up picking three. Music has always been the mainstay of my life. One of my friends chose “Fix You” By Coldplay. I listened to all the songs chosen and this one resonated deeply with me.

As of late there has been a lot filtering around with Alexandr’s care that has been incredibly difficult, and I have found it so hard to muster the strength and tenacity in myself that I typically have. that strong will and push forward attitude I always seem to have has been so rocky. perhaps it has been because of some of my own personal struggles but whatever the reason my resolve is being tested by everything that is facing us at the current moment.

Alexandr entered this world under the most spectacular of circumstances, at thirty three weeks, and spent a month in the neonatal intensive care unit. Since then it’s been a non-stop roller coaster ride. In the last year we’ve spent a large amount of time in therapy four times a month. We have had progress, and we have had setbacks. Anytime we make headway I feel like we do an about face and it’s two steps in reverse.

While other parents can speak to their children who are about to turn three, I cannot. Instead we communicate mostly through hand holding and pulling. I have spent the last few weeks struggling with what therapies to choose for him, what will serve him best, how to get them for him, and how to move forward.

Progress.

That’s always the word of the day, how to make progress. How do I get through to our son?

I told my sister the other day, who understands exactly how I feel, that I feel as though it’s like being locked outside a house with your child inside, staring in a window from the cold. You cannot get in until they can figure out how to open the door.

Autism is a fickle thing, and though he may not have an official diagnosis yet, that’s the label that we’ve all put on it at this point, his therapists included, and it’s something that over time, I’ve had to come to terms with.

Fix you.

That’s exactly how I feel.

I wish I could fix it. I want to fix it. I want to make it all okay for him, and make the pain go away. I don’t want my son to be upset when he is around too many people, too much light, sound, or just general chaos. I want him to be able to go from place to place without being so upset he can barely breathe. I want to take all his pain and anxiety and bear it on my own shoulders. Give it to me, and make him okay.

Today is world prematurity day and I was reminded once again how precious he is. Despite all of this, and all of our struggles, I have taken the last few days to step away, away from all of it, the appointments and therapist evaluations. The upcoming school placement (he starts preschool in February). The developmental pediatrician evaluations and the figuring out what to do about this child psychologist business, and I stopped to enjoy my son.

Sometimes I get so caught up in all of the need of development. I forget to just slow down and enjoy him as he is now. I focus so much on what the next step is, that I forget to take in the now.

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 Sometimes we have to just let go of what we think we can do, to find out what we really can do, and be. We have to get out of our own way. I feel like I spend so much time at times TRYING to be the best parent that I can, that I miss just playing in the dirt with my son. I should let go more often.

In the past two days I’ve been able to take down the barriers in my house and stop using the baby gate, and bring him a little more into my world. He has his own space in our office at that little desk of his own. He is learning a little more about boundaries and I think he’s actually understanding it a little bit, because I’ve given him that opportunity. We both have been feeling sick as well and for the first time since he was seventeen months old he wanted to sleep in my bed with me, and I haven’t gotten those kinds of cuddles since he was that age either. I forgot what it was like to have him need me that close. I cried my eyes out after he fell asleep. Something he will probably never know or understand, but I needed that from him so badly.

I just needed to try, to let myself know what not only I was worth, but what he was capable of.

I think we both needed what came out of the last few days.

There is no fixing that needs to be done in this house I have always known that, and while I may always want to make him feel better because I’m his mother, and will always want to take that weight off his shoulders, I’m learning every day to handle things a little better. It is all a process, and we learn from each other.

 

Cause he’s stronger than you know…

Where to start today.

When you’re the mom of a kid with special needs you work in steps. Sections. Small plans. You can’t ever look too far ahead because then everything gets too chaotic, too fragmented, and just too hard to handle. So you work in compartments. In our case it started with Alexandr’s first set of therapy last year. It was a six month compartment, and we set goals. There are always goals, things you hope to reach and see. Little milestones. Small victories. You hope for the best and you try to tune out the children around you, parents too. Not because you’re trying to be mean. You have to, for me when I take in those around me, it’s too much of a reminder of how far we have to climb, and an ever painful truth that we may never get there.

It’s a constant face to the forefront that my beautiful little bear, may never meet the world’s standard of “normal”. I have mourned so much from pregnancy to now, that it has been hard to handle the roller coaster of emotion that comes along with this. When the time came for me to go into the hospital at 30 weeks for the first time, I thought maybe, just maybe, it would all be okay somehow and it was all just a dream. I’d get out and go back to “normal”. Normal. You hear that word so damn often and I hate that word. I wish I could throw it out. What is normal anyway?

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I had no idea when I took this picture, alone in my hospital room, that a few short weeks later I would be sitting in an operating room holding the hand of a man named Darrell, my kindly anesthesiologist as he assured me it would all be okay. They were telling me my son wasn’t getting oxygen, and that something was wrong. Dr. Adams, the man who would deliver my son, told me not to worry if I didn’t hear him cry. He probably wouldn’t cry, as they delivered my spinal block and did their best to make sure I was numb prepping me for my c-section as Daniel waited outside.

A short while later Alexandr made his entry into this world and nothing about it has been “Normal” since then. I spent time recovering from my c-section brushing up on infant CPR and learning how to clear his airway in an emergency. Sadly I had to use that once. No one should ever have to see their child turn blue on them. I have.

Alexandr has spent his life fighting but he is here and was released after just under a month in the hospital. When he was almost two years old and could only speak a handful of words, spent more time being entertained by the ceiling fan than his toys, and took no comfort in my embrace. I began to worry. Six months ago right around his second birthday Alexandr was officially pronounced to be delayed by about a year. We truly had an issue. I felt like I had failed him once again. As much as I struggled and felt like I failed standing in that hospital room, standing in my living room after his therapy team left, I felt even more so. That’s when I began to hate the word “normal”.

Alexandr now has glasses as well as Nystagmus which is an uncommon issue where his eyes bounce back and forth, which, he isn’t aware of and cannot control, but can be seen by anyone who looks at it from an outside perspective. Another difficult blow, another thing that cannot be fixed.

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After six months of the knock down fight of therapy, Alex has seen good days and bad. We have seen progress but not forward motion. Recently we had a blow to our guts. His therapist came to me and finally said the words that I knew were likely coming but that every parent in my position is so afraid of.

She told me that we should have him screened for Autism Spectrum Disorder. They fully believe him to be on the mid to high functioning end, but ASD none the less.

Compartments, sections, little victories. We struggle every day and we spend our time looking at the smaller parts of our world because we cannot look outside, we cannot compare or big picture.

I took a step back from all of this.

I spent so long blaming myself for all of this and feeling like such a failure for not being able to give him everything, and allow him to have a life free of struggles. I felt as though I had to have done something, anything, to cause this. I know that I am wrong, and nothing I could have done would have made any of this better. I also know that “normal” does not matter. Alexandr is extraordinary.

Alexandr does things in a very special way. Alex sees the world in a way I will never ever see it. I am lucky to be around him. When I finally stopped trying to reach “normal” I found him. I found the beauty in my son just as he is. He shows me every day that he is there, in there, he may not show me in the way that everyone else’s son does, he does in his own way. Alex’s way. Alexandr is a superhero all his own. He hit a small breakthrough recently, and we have seen more progress, he has even found a unique way of communicating.

To other parents, I want to relate to you. I want to relate to parents who have children that carry on conversations with their three year old. My son does not even answer to his name yet. Please never misunderstand me, I cheer for your children, but I do not understand what that is like yet. I wanted to shout from the rooftops because my son who is almost three decided to use a fork for a few bites of his food.

My son still only knows about fifteen words, he often melts down at stores because of the noise, lights, and people, and my daily stories are not the easiest to tell. I spend my days, weeks, and months in small victories, baby steps, and compartments. Please don’t ever misunderstand us, we have to work in these ways to survive. Our time is filled with individual education plans, occupational therapy and speech therapy, and which toys should we buy for the engagement bin. How can we improve our sensory corner? Parenting for me is so very different.

I had a woman stop me during a time where Alex was completely overwhelmed by the grocery store, at the end of a very long trip, he was screeching at the checkout. She leaned over to me and told me I needed to learn to discipline my child.

Our world is different from yours, please please understand we are doing our best, and our world is just not the same as yours. I know at least for Alex, Zane and I, we do everything we can do get through this all together, the best we know how.

We try our best to find joy in our lives, we celebrate Alexandr for exactly who he is.

Besides, what is so great about “normal” anyway? This life is dizzy, it’s hard, and everyone, even people who have children that aren’t special needs may not have it easy, so we celebrate him. He is our superhero, and will always be.

We love you Alexandr, and no matter what, one compartment at a time, we will get through this.

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