Don’t let life’s challenges distract you from what really matters

This post was written a few months ago and never published here. I want to share it anyway because I feel it’s a good message

Sometimes life can be pretty darn shitty. There are challenges upon challenges that can become major distractions that pull ones attention away from what really matters.
image

There are plenty of times that I feel like the poster child for the above situation.

If you follow my story and read this blog on a semi-regular basis, you know that things haven’t been going so well for me.

The boys and I have been on our own since my wife (their mother) walked out over a year ago.

It’s probably fair to say that I have a little bit on my plate. I’m going through a divorce that has broken my heart in more ways than I can explain. I’m trying desperately to help my three boys with Autism get through this traumatic life change, with as little permanent scaring as possible.

At the same time, I’m at war with my own demons known as depression, working from home because I have no help with my kids and can’t work outside the house, all while I continue to provide support in various forms, to the Autism and Special Needs communities.

Read This  This #Autism Dad is climbing up on his soapbox for a good cause

I quite often find myself utterly overwhelmed by everything. Frankly, I’m overwhelmed by just part of everything that’s going on.

My kids are struggling to adjust to our new journey and it’s not always pretty or graceful. My oldest with fragile health is beginning to have some concerning health issues again as well.

While I’m really trying to be a positive person, I tend to become overrun by these challenges and I lose sight of what’s most important.

It’s so easy to become distracted by or hyper focused on the challenges that need to be overcome, just to make it through the day and if doing so was a crime, I’m guilty on all accounts.

Having said all of the above, I want to share something else as well.

There are moments in each day that we are often moving too fast to notice. These moments are brief and yet if we can just slow things down enough to actually experience one of these moments, we can be reminded why we are doing all of this in the first place.

Read This  Dear #Autism Parents.............

I had one of those moments tonight.

My kids were outside in the backyard catching fireflies to feed their toad. I was sorta looking at this as a chore because it was something we had to do in order to feed the roads they rescued over the Fourth of July.

I joined them catching fireflies tonight and I found myself getting caught up in the moment.

We were racing around the yard, trying to arrive at the locations we last saw that beautiful yellow glow of the fireflies, before the disappeared into the night.

I ended up taking a few steps back and realized that this is what’s it’s all about.

This wasn’t about feeding their hungry toads, not really anyway.  This was about experiencing the wonder of childhood and remembering that no matter what challenges I faced before that moment or will be facing afterwards, my kids were giggling, carefree and dare I say it…………happy. 😀

Isn’t that one of our main goals as a parent?

Your moments can and will be different than mine but hopefully, after reading this, you’re more aware of what to look for now. 👍




6 Comments

  1. Annie

    Hi Rob. It’s all about those moments. You should give yourself a big hug for stepping back and paying attention. It is so easy to lose sight of those moments when you are wading through it all. I have a daughter with autism and a brain injury and am overwhelmed with it all the time. I enjoy your blog. Your boys are lucky.

      1. Annie

        Thanks for asking. I’ve been struggling to get anything done lately. By the time my hands are free its late and I’m exhausted. Sound familiar? 🙂 So…the piles are growing around me. Literally and figuratively. My little girl has good days and bad days. Two good days in a row this week. Funny though how our good days look like bad days for some kids. Keep writing…it’s so good to get it out. I blog too. I sometimes feel like it’s me whining out loud but it’s a good release. Happy Thanksgiving if you celebrate…

  2. EarthyHippyChic

    You know most people don’t know what to say to you as a Special needs parent. Most people don’t realize that they DON’T need to say anything to you. I would rather hear no words that to hear offensive ones like “I’m so sorry” or “That must be so difficult”. Parenting is difficult no matter who you are or whether your child has a disability. Being a parent and trying to raise a GOOD child into a GOOD person when you have technology, people and peers working against you is difficult regardless. Raising a child with autism I do not have time to feel pity for myself. After hearing those words, I did try to reflect once on it and I came to the conclusion I have no reason to be pitied. My Jaxx is 6 years old. He went from completely non-verbal to having a small vocabulary and now the ability to form 3 word sentences such as: “I said no” when I try to take the phone and his YouTube videos away of Tom the Train, Barney, teletubbies or whatever children’s show I am tortured with hearing on a loop 🙂 My child is HAPPY. He laughs and dances and doesn’t give one ounce of f**k what anyone thinks of him. That’s freedom. My child is SMART. He can figure out any puzzle, technological device, lock, knot, escape route, etc. That’s the ability to adapt to surroundings my friends. My child can run faster than most humans of any age. Give that kid something that someone else wants and good luck catching him. That shows Athletic ability. Future Hall of Famer? Future NFL MVP? There isn’t one thing that I can think of that would require pity for my son or myself. The worst part of being a special needs parent in my humble opinion, is having to deal with people who are ignorant to this disability and feel the need to make comments or stares when my child is stimming, screaming, laughing too loud, can you imagine laughing too loud? Sure this would be a problem in a library or church but I know better to stay away from those areas. You see I have to plan my trips with my son around times where I hope most people won’t be there. So I don’t have to go all crazy on someone who says something ignorant about my child. I am just like any other parent. If you hurt my child in any way I will rip you to shreds leaving no possible chance of repairing the damage. I won’t even blink or hesitate, in fact I am poised and ready. See, my child is different, yes, my child has a disability, yes, but what most people don’t realize is…MY CHILD CAN HEAR YOU. None of my child’s disabilities involve his hearing abilities. The worst part of that is most likely I will never know how what you say out loud, or what look you give, affects my child. Can you imagine that? Try it for a minute. Try to put yourself in my worn out shoes and think how YOU would feel if your child heard something hurtful about him/herself and you don’t know how they processed it? Did it hurt? Did it get stored in the memory banks playing over and over on a loop in their heads? Are they crying on the inside? Do they associate it being directed at them? These are the questions that fly around in my head in the nanoseconds before I am tearing off your ignorant head. Because even though I don’t know how or if my child is affected by your words or stares, my child will see his Momma react and defend him. Pity me? Pity my son? No. Pity yourself that you will never know the beauty of raising and caring for a special needs child. Anyone can see the challenges. I have 4 older children that reached their milestones and targets at the appropriate times blah blah blah. They rolled over at 4 months old. First words by 7-9 months old, walking by 15 months old, sentences by 2 years old, all of those milestones. Jaxx did too. Then at 2 and a half he regressed to no speech at all. At 3 years old we had a diagnosis. Which was devastating. I didn’t know what it meant. I asked if my child would live. I didn’t know ANYTHING. After a week of crying and holding Jaxx and apologizing for whatever I did to cause his disability…. I took out my laptop and I started researching. I started finding groups on line to talk to and see other parent’s journey’s. See what others had gone through helped me out a lot in knowing what could happen, how to avoid certain situations, most importantly how to keep my child SAFE. Am I tired? Hell yes. Turns out JAxx doesn’t need much sleep. Am I overwhelmed? OH HELLL YEEESSSS. Everyday. All the time. Am I the perfect and patient Mommy who never makes a mistake or yells or needs to apologize to her kid? HELL NO. Do I feel bad about that? Yes. But then I remember that my older children didn’t have the luxury of a perfect Donna Reed type of Mom so why would I be an exception to Jaxx? I’m human after all. Jaxx thinks I am a Superhero, so I must be doing more right than wrong. Now almost 4 years later to the day of diagnosis which was right after his 3rd birthday, we have come a long way baby. I have been a single parent for two and a half years. I don’t have family. I have a small circle of friends, but no time to see them. If someone who knows me can’t understand I am busy with life. They can go…far away, buh bye. See, I have no doubts that my Jaxx will finish school, go to College and be Independent. Will he do it on the time table that Pediatricians have outlined…probably not. It may take him a little longer, but he will get there. Need I remind you of the tortoise and hare? If that doesn’t strike any chord may I point to the research of more and more grown, college kids and older moving back in with mom and dad because #ShittyEconomy? Go ahead, Google it, I’ll wait. Well, no I won’t I have an hour lunch and minutes left of it. My greatest wish isn’t for a cure for my Jaxx. A couple years ago I would have given my soul for one. Maybe someone in their right mind still would, but I am going on year of lack of sleep, not a great diet, being a single parent to 4 boys, working full time and being on God’s good humor to figure all of it out…on my own. Years of that, constant research, I am talking thousands, maybe tens of thousands of hours of research on what I need to know, what is known and what is next in the knowledge of Autism. So a cure? What does my son need to be cured of? He is happy, healthy, loud, proud, intelligent, funny-greatest sense of humor…he doesn’t have a disease, he isn’t sick or in pain. He’s a kid. He loves his life, and may I say what a great life he has…everything on his schedule, more fun that legally allowed I am sure judging by the looks on other parents faces. He loves his life, I love him, we have fun, most days, some days I just need to be over with quicker, but that’s life. That’s how NORMAL my life is with my youngest son. So don’t pity me, don’t pity him, pity the fact you are so ignorant on a disability you feel the need to pause your life to stare or say something another parent doesn’t need to hear. We may already be at the end of our rope and on any given day we could wrap that rope around your neck and pull it for all it is worth, or mentally see ourselves do it which is why I smile a lot. Raise your kid the way you want, concentrate on YOUR JOB as a parent. I haven’t been too impressed by the majority of Parents. You know who impresses me? The special needs parents who look at their children with love and pride in their eyes, a smile on their face and their heart so big and wonderful it puts a smile on my face. You are not supposed to look at your child and see flaws so why would you look at your child and see limitations or disabilities? Exactly, you don’t. Don’t do it to my child either. There are many parents who will never cause a scene or say something out loud to put you in your place, but I am not that parent. I’m kind of crazy. Do us all a favor. Don’t judge, don’t stare, don’t roll your eyes, don’t feel the need to utter anything from your ignorant mouth. Instead, smile at us, we need it. Offer a kind word, we need that too. Make a joke about “been there, done that” so we feel normal. If you can’t do any of that just stay away, walk away and let us try to figure out what we need to do. It’s a lot harder when the stress is compounded by the rage of someone saying something stupid. We want to calm our kid and be there to sooth our child more than you want our child to be quiet. TRUST. Our children are not spoiled brats who need a “whoopin”, they are complex puzzles of which the pieces are all scattered in second leaving us seconds to fit them all back together before the melt down starts. Basically, we are trying to figure it out too, as quickly as humanly possible, because we are just that…HUMANS.

Please Share Your Thoughts