Acceptance

When you find out you're going to be a parent there's a mix of fear and excitement that comes over you. You start planning all these wonderful things and hoping that this child will be able to do such great things in the world. The fear is mostly the worry of the health of child and birth. Also, what the future will hold for them. When you find out that your child is going to have a disability, there's this other fear that occupies your mind. Some of those dreams you had for them get clouded or disappear. You feel crushed, broken even. You worry how will they function, how will you manage, how can they survive without you, how do they live  within a world that doesn't understand or accept them?

When we found out that the boys had Autism, it changed everything. All the plans and dreams we had for them, in am instant changed. I felt those dreams for them slipping away but already familiar with Autism through family members, I knew this was not a sentence. You have to quickly push yourself into acceptance. I gave myself 10 minutes to mourn the dreams I had for my sons and work to accept the dreams that they would have for themselves. They would reach their maximum potential and I would support them every step of the way.

I went into fix it mode. The let’s tackle it head on and find away. For their dad, it took a little longer and some days he still struggles with the fact that our youngest son may not adapt to society's norms the way we had hoped. We worry that both boys may not always “fit in”. Since we can't always make society accept them the way they are, we have to prepare them for the world outside their heads. That's not an easy pill to swallow. To know that your child may not have a lot of friends or any. That you talk and they may not always be with you despite being in the same room as you. That you discipline and it goes unnoticed. That you make a joke and they don't get it. That you can give instructions and they can forget it a minute later. That they don’t understand why you are constantly instructing or placing demands on them. It's not easy for either side. 

Yet, if you love. Love them as much as they love you and more, the walls will come down. Their eyes brighten and their smiles gleam. They connect through love. Love what they love and be apart of their world. Acceptance WILL come for you both, you will connect and you WILL be a better parent for it.

Here is a link to a short Pixar film that was created by a father, Bobby Rubio, who was having difficulty connecting and accepting the reality of his sons diagnosis of Autism. He expresses his journey in such a poetic way, that I had to share with you today. This is just a brief trailer but impactful.

https://youtu.be/xu0UmLzClus

I highly recommend that you watch this short film if you have the opportunity to.  You can find it on Disney+ Pixar short films. I only wish I had the link to the actual short so that you can actually watch it for yourselves. They really should be available to everyone, it's beautiful. Pixar is doing a wonderful job with the telling of these shorts stories. Be sure to also watch Wind and Loop, two great little films that carry quite the powerful message. 

Being a parents is hard and, we can be critical of ourselves. Being a parent with a child with differences isn’t any easier. There are days where all I can do is laugh, cry. Where I can lose it and, regret every word or action. Wanting your child to fit in comes from the fear of not being accepted. Society doesn’t bend to them, they bend to society. You want to protect them, but they may not see it that way. Considering this, let’s give our kids a break to be themselves, rejoice in it. Remember, the world will be hard enough on them, they don’t have feel like outsiders in their own home. Family is supposed to be their safe place, a place where they can be just who they are. Make sure you give them that. 

We are blessed for sure!

With love and dedication anything is possible!

Bubbles.

Just the other day I was thinking the back when I went in to get my son initially evaluated for disabilities. I remember walking into this brick government building that had the smell of stale air trapped in it. An older gentleman walked us back to a room where I was to answer several questions about my sons behavior, development, those kinds of things.

He was in a little corner playing with some toys and I was answering the man's questions. Something suddenly startled easy, something made him get up in a burst and start running around the table that we were at. As soon as I went to go grab him rather just before, he banged his head on the corner of the table. So hard I cringed as I felt his pain. But he, he did not. He wanted to continue running around the room as if nothing happened and it broke my heart. Most parents would want their child not to get hurt and it is true that I didn't want him to get hurt but I didn't want him to feel at that moment. I would've given anything for him to feel what just happened to him. 

The man doing the evaluation, looked at me and asked "do things like this happen often?"I put my head down and said yes. After bringing me some ice for his head, he said to me that there was one more test he wanted to do, that I could be in the room but I was to not encourage or participate with my child. But if I found it difficult I could sit on my hands if the child came to me. I was to not speak speak for him or engage with him during this time. I agreed and we started. We then walked over to a smaller room one that reminded me of the ones you see in the movies where the insane person is capped and there's just a small window to peek on them. We went in I sat down in the chair in the corner and immediately sat on my hands knowing that it would be difficult for me not to want to hold my son when he came to me. At this time, I was the only person he saw it but rarely wanted me to touch him. 

Screener began to try to engage my son and play but he would not. The man pulled out some bubbles begin to blow them. Nothing In between blowing he would tell me "children love bubbles. They can't help themselves, it automatically brings joy out in them." He blew more bubbles. My son did not look at the bubbles, did not try to pop the bubbles, kept on as if they weren't even there. Afterwords the screener run is back to the original room where E had hurt his head. It was there that he told me that my son likely had autism. It was there that I felt my heart grieve. Ignorantly, I felt nothing but pain and loss of a dream for him. As a mother when you're pregnant you think of all the possibilities this child will have. Of what they will look like when they grow older, how they will be or who they will become. You never expect or plan for things to go wrong or be different. At that point all I knew or felt was that I had to prepare for a life with a child who would be different. The man looked at me before he left and he put his hand on my shoulder and told me "my son has autism. I have never heard his voice. He lives in a small apartment and has a small job. He a health aide that checks on him regularly as do I but he's independent.This is not the end for your sons future, do not let it be." if he only knew how much of a gift that statement was to me. 

Having gone through many of the early struggles of acceptance, I began fighting for all that I could do for him so that he could reach every bit of his potential, if not more. Doing this has been worth it. Today, E is outside playing with his brother and sister. Actually engaged in play with them. I am reminded of this day and I wanted to share it with you. Here we were blowing bubbles and I was able  to watch him run in his sisters rain boots and play with his siblings, chasing after bubbles. Popping them and smiling with joy. It filled my heart and reminded me how far we have come. 

The pre-screening was hard. Probably even harder than the day we actually got his clinical diagnosis. The positive is that it prepared me and taught me that I need to fight for my son. That 10 minutes of wallowing was enough. That from the moment he was diagnosed, I have done nothing but what I thought was best for him. And if all he ever did was chase bubbles for the rest of his life, I'd still know that he traveled leaps and bounds to get here.

Once I was told I would never have children, now I have three. Today, it's bubbles, tomorrow...the moon!

We are blessed for sure.

With love and dedication anything is possible!

Bells and Alarms

Paired sleeping for comfort

Bedtime in our house is a familiar routine to any other household with kids. You know, that mad frenzy to get the kids fed, washed and clothed for bed. You pray you can get it all done before 9 pm so you can tend to some house chores and maybe get a chance to shower before you crash into bed. It was a night just like so many others of wrestling to get kids down when I found myself thinking back on simpler times that I recalled something about E.

When E was just an infant, he always seemed to prefer to be swaddled for bed. He slept best that way. He seemed to love to be held close or snuggle with his twin sister in the crib. If you put him down alone and unswaddled, he would cry. We thought it was because he was colic. But as he approached the 1 year marker, he liked me to keep my hand on his back while he fell asleep in his crib. Many nights I stood at his crib side, my hand on his back. If I removed my hand he would cry or wake. So back my hand went on his back. I became a pro at alternating hands with out him feeling my switching of hands. It was exhausting. And God forbid his sister would wake, then I just had a cry fest on my hands.

Many times I thought of filling a dish glove with rice to lay on top of him to try and give myself a break. My concern was that some how that could hurt him, so I never did try it. Little did I know that weighted blankets would be in our near future.

Nightly headstands

After the year marker, he liked me to hold his hand or rub his feet. Eventually, he just wanted me in the room with him. He would stand on his head or ram his body against crib. So every night, I lay on the floor with the twins as they fall asleep.  Stopping E from potentially hurting himself. Some nights are more of a struggle then others but it is improving. No more body ramming or headstands since we give him plenty of sensory before bed. Melatonin helps him settle down a lot quicker, as well as a drop of essential oil on his pillow and woobi (security blanket) to help him focus on his breathing.

In any case, I thought back on this time and realized that he was seeking sensory stimulation even way back then. I also made the comparison in my mind in regards to my eldest son. Another sensory seeker from early on as well all though we are just now learning that this is what he too has. E, still loves a good tight hug so long as it's on his terms, loves joint compression, a good pillow squash and is slowly starting to enjoy the brushing. Both my boys do.

Bells and alarms.

I wonder why I didn't put it all together sooner. Was it lack of experience as a mom or denial? Perhaps both. My first son, N, met all his markers on time if not earlier then most kids. And E, my second, did not, so it was easier to notice some potential problems for him. So how did I miss N's sensory issues. Early on I though maybe there was something going on so I had the school evaluate him for potential behavioral problems at two but they thought he was just high energy. But there were signs, the late speech development, the covering of ears, the constant jumping and moving, the slamming his body into yours for hugs, the unexplained outbursts/fits, jumping from high heights, banging his toys down hard. Honestly, his hugs feel like a Mack truck is trying to run you down to the ground. Kisses that squash your face. Anxiety. I mean I should have known something earlier but I just figured because he is so bright that he was quirky. I LOVE quirky. And the professionals were telling me he was okay. My boys are healthy and happy, it's all a mom ever really wants to hear. But I kept pushing for answers.

So now at 5, N has been formally diagnosed with Sensory Processing Disorder and is now receiving Sensory Integration Therapy through Occupational Therapy. An answer and a solution.

Having these diagnosis' for my kids doesn't make life any less challenging but it gives us a great deal of explanation and motivation to get them the help they need to be successful in life. Do I still long for simpler times? Sometimes. But truthfully, they were never REALLY simple. Nothing ever is.

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Diagnosis Day

You prepare yourself for D-day. You suspect it, you convince yourself that the worse case scenario is still better then most. Convince yourself that diagnosis will help. You say the word/(s) regularly to reduce shock value. You do your best to prepare but the news is coming and your still not sure if your ready. Then you hear the words "I summed up his ADOS among other things with my notes...." What seems like longest pause ever. " And well, it looks like your son did test for Autism." Crash! It's reality.

To some extent it was a huge relief but also a big let down. We heard a lot of mights, maybes and ifs but nothing concrete. More then anything, I was relieved because we finally knew what he was dealing with. Yet the mom in me, the irrational part of me, wanted to cry, wail because how could my "perfect" boy have Autism. 

You go through all the scenarios even while the doctor is spitting information at you.  I'm thinking, I just didn't take enough prenatal vitamins, I was to old, on to much bed rest, not enough rest, stress, twins, maybe the IUI drugs, etc.  Words and thoughts swirling in my head like a cyclone. What could I have done differently? I tune back in to hear "tested low to medium." That's good, right? "Yes, that's good." 

Then Doctor C. begins to discuss game plans for him. Many which we already have placed, speech therapy, occupational therapy, ABA(Autism Behavioral Analysis), school. She reassures me that he will be more then fine. That he is very bright and has come along way in only 10 months of early intervention. I remind myself that only 10 months ago he had stopped talking all together, wouldn't look at me or even let me hold him gently. I knew even then, I knew but now I know. 

To some aspect I guess a mom always knows but denial can be powerful. Even as I started him down this process, I fought my denial in search of answers and I got what I wanted, an answer. The answer is Autism. 

Of course, now I have a million new questions and a new search for answers but the most important answer I have is that my son will be okay. My son may be living with Autism but he is not Autism. He is perfection, beauty, brilliance, lively, happy, unique and a loved little boy.

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