A Public Service Announcement on Bullying

Recently, Samuel and I had a very challenging experience with a couple of bullies. We’ve had other run-ins with bullies (Read more here. ) After the previous bully encounter, I resolved to face the issue head-on:  with the parents. I did just that, this past week. However, I’m left with the regret that I could’ve done more. Instead of allowing my Mama Bear to take control, I’d rather be calm and teach the parents the better way to handle their bullying children. Possibly have them meet Samuel properly and teach them the better way to interact with him. 

I’m praying about a systematic response (a prepared speech of sorts) to make the encounter easier to handle emotionally. Kind of like the one I give to people when they ask, “What’s wrong with him?”  *insert eye roll here* Not because people are curious, I don’t mind that, but because people have no grace anymore, no nice way to seek information.  

I’m instructing my “typical” children on how to stand up to bullies for themselves and their friends, knowing that one day in the not-so-distant-future, they’ll be the ones to protect their big brother, Samuel.  I still have a lot to learn; but in the mean time, I’m doing my best to educate parents and children alike. 

The video below is a true story about what happened to us followed by a hopeful solution to the bullying epidemic. Please feel free to share. 

Perspective

Raising children is hard work. Raising a special needs child with disabilities and health issues is on a whole different level of crazy hard work. Most days I’m exhausted to hopelessness. I wear too many hats. I keep my thoughts about these things to myself most of the time because 1) people don't understand, 2) I don't want to complain, 3) I expect my children to read this blog one day and I never want them to feel bad for my sacrifices as their mother. However, I started this blog with the hope of helping other special needs families. Having someone to relate to and understand the struggle is priceless. Brace yourself:

My hands are raw from the constant cleaning of vomit and poop .

My bones and muscles ache from having to overpower my fighting eight-year-old while I care for him, clothe him, bathe him and change his diaper.

My emotions are on the edge of a meltdown with concern about every facet of his current and future life.

My heart breaks for the pain he endures on a daily basis.

My shoulders hold the heavy responsibility of being severely observant over every detail concerning him in order to be proactive against sickness, injuries, regularity, diet, hydration, and more.

I feel guilty about my "typical" children not receiving as much attention as they should.

I've been sleep deprived for 8+ years with no end in sight (Read more here).

I'm hardly reliable and never predictable.

I have no social life outside of my home and work, not even church is a place of connection. Unless you come to me, it is extremely difficult to connect.

I do not call on help unless absolutely necessary for fear of exhausting all of my resources.

I've heard "You only call me when you need help with your kids" more times than I care to remember (reference the previous two entries).

I want to visit, I want to connect, I want friendship, but my time is severely limited, my energy is reserved for long nights, early mornings and hard days.

"Fun" is so far from my vocabulary that it seems like a distant memory.

"Rest" seems unobtainable, especially not on "family vacation".

My marriage suffers. Greatly.

Just to name a few.

Yes, I carry it all, it is my daily reality, I feel alone, I struggle, I fight, I'm tired... But recently I received some perspective: I attended a funeral of an autistic boy. He was hit by a car and died immediately upon impact (Read more here). Funerals bring much perspective and ones that hit close to home can rock your world.

I didn’t know the boy well, he had no idea that his life gave me much hope. He attended our church once in a while; every time he visited it was a blessing to me. He gave me hope for Samuel’s future. I often wonder what Samuel will be like when he is older. This boy was a no-nonsense, unapologetic worshiper and lover of God. I could see Samuel becoming like him which brought me much joy as I envisioned Samuel’s future.

While looking at that sweet boy in his casket, I felt a great sense of honor. I am honored to carry the weight. I am honored to be trusted with such a significant task. There aren’t many who can do what I do. I would not trade my role for anything.

Right now, his parents are living every parents’ nightmare. I couldn't imagine burring one of my own; actually, that’s not true, I have imagined it and I have come close to walking in their shoes and it was horrific to think about. God saved us, saved my children from death on more than a few occasions. I am forever grateful for Him and His saving grace. I can’t even begin to put into mere words how much I appreciate God stretching His hand out to save us.

So today, I have perspective. Yes, I carry extremely heavy burdens, but He carries me. God's grace and love is the only way I'm able to do what I do. And I love what I do.

Family Vacation 2017
Maybe one day I'll tell the story.
God's saving grace is amazing.
I can't thank Him enough.

Deficits and Declarations

I feel a melt down coming on... that weepy, tear-filled-eyes feeling that you just can't shake. When you can't see the good, only the bad. When you don't see a way out. No light. No comfort.

I want to blame it on the doctor. It was only a check up. I didn't need to know the tendencies of Rubenstein Taybi Syndrome. I didn't need to know what to "look for". I didn't need to know that he is well below the average scale as well as the RTS scale. Yes, I'd like to blame it in the doctor, but it's not his fault, not entirely.

Samuel has been extra fussy lately. Fussiness that's actually a cry for something. A need, a want, an exclamation! I don't know. That's the exhausting part; I DONT KNOW!! I don't know!!! I don't know what my son needs, wants, desires. I guess. I guess wrong, time and time again. I tell him to show me on his iPad; he refuses. I tell him to use his words; he can't.

I'm a mother who can't help her child. I'm at a loss. A deficit. I'm struggling.

We have victories, yes. We have success, yes. But the struggle and frustration on both our parts has tipped the scales.

I imagine what life would be like if Samuel were a typical 8-year-old. Helpful, nurturing. Instead he is the opposite. And I hate to admit that. Even his younger brother and sister see it. His 2-year-old sister looks out for him, warns him, protects him, helps him. Our house dynamic revolves around Samuel's needs.

But more than that, what Samuel is, what he declares with every slow, unstable foot step, with everything within his little being: a lover, a healer, acceptant of all people, an encourager, a Saint.

And I am honored to be his mother. As exhausted as I am, he is worth it. Every tear, every meltdown; he is worth it. I pray his siblings feel the same.

So when you say, "I just love Samuel, he blesses me so much", you're actually strengthening me. He could care less what you say or think, if you're blessed or not. He is who he is; he makes no apologies, he does not need your validation. He does not struggle to be who God made him to be. I am the one who struggles to let him be who God made him to be!!! His brother and sister are the ones who struggle!!!

So my prayer tonight and in this season is "God give me and my children the grace to face the challenges beset before us. Help us to accept who you made Samuel to be. I let go of what could've been, what I think it should be and I give you total control. As I grieve the loss of my dreams for my children, I'm trusting You to replace them with Your dreams, Your plans, Your thoughts and Your ways. I'm trusting that Your peace will wash over me and my household, I'm trusting that You'll send help, that You'll strengthen me and that joy will come in the morning! Amen!"

Bubbles or no bubbles...

What do you do when your 2-year-old is more advanced than your 7-year-old?
I can tell you what I do... grieve and blog.
The trigger: blowing bubbles.
Yep. That simple. A task every child seeks to accomplish. Exciting!! Yet it is a task my 2-year-old has mastered and Samuel (7/almost 8-years-old) cannot. Not yet anyway.

My 2-year-old, Ellie, communicates better than Samuel. She follows directions better than Samuel. She's able to do more on the playground than Samuel. The list goes on. I won't harp on it.

I remember years ago, (6 years to be exact) pregnant with Gabriel, being worried that Samuel's little brother would supersede him (see this blog entry). Them being a mere 22 months apart I could justify it in my mind. But now! Oh now!!! Ellie and Samuel being a vast FIVE YEARS apart; this allows for no justification. I have to face the hard facts: Samuel is 5+ years delayed.

I don't grieve because of the delays. I grieve because of the Samuel I don't know. The thoughts I don't hear. The desires he has that he can't express. The dreams he's dreamt. The funny ways he sees the world. I'll never know.

I grieve because I don't know him as well as I know my other babies. Will I ever? Will he be able to tell me his favorite song? His dreams at night? His dreams about his future? I grieve for the unknown.

It's a process. But I can tell you, he is the sweetest boy I know. He may not be able to talk or blow bubbles but he can bring a smile to the hardest of hearts. I rejoice in his abilities. I rejoice as he rejoices with others in their accomplishments. The way he praises Ellie for blowing bubbles. The way he laughs when she sings or counts or does anything else he is not able to do. And I encourage him! I encourage him to blow bubbles, talk, poop in the potty, sing, pray, draw, write, count... I am his biggest encourager!! Forever and always.

Play nice

Daddy and I took the kids to a splash pad today. They had a blast! We couldn't find Samuel's (RTS, 6-years-old) water shoes, so he went barefoot; which, I won't do again, his little toes were bleeding by the time we left 😢 While we were there Samuel greeted all of the children with a sweet smile, high five and a laugh, as per the norm. I watched the children's reactions to his friendliness. Some were open to it and smiled back at him and laughed while others looked at him like he was crazy. (Actually, this world is crazy for friendliness not being the norm anymore. But that's another post.)

Kids love being chased by Samuel. It never fails, any playground we go to, it ends up being a game where the kids are running from Samuel. I haven't decided if I'm okay with this or not. Samuel enjoys it, so that makes me think its okay. But the kids run, scream, laugh and I don't know if it is because of his "hum": it kind of sounds like a growl when he gets really excited. I don't know if they are making fun of him when they run or if it is an honest game of chase. Verdict is still out on this one.

But today. Today was definitely different. The chase game started with a few girls around 8-years-old. I observed closely, Mamma Hen, waiting to turn into Mamma Bear. Then it happened, "Did you see his toes??!!" one said to another. "Watch how he walks", as they proceed to imitate his wide gait, in his face, taunting him, trying to get his attention to begin the chase again.


My heart sank and ached for him. He had no idea. He was content to keep chasing them. But Mamma Bear was fuming. I chose not to say a word. One of the girls noticed that I heard them and they stopped. I wanted to say something to their parents, but what? I wanted to say something to them, explain his diagnosis. But what good would that do? What would be learned?

Then my attention turned to Gabriel and Ellie. How will they react when they realize that their big brother is the object of ridicule? When they're old enough to understand what is being said about their big brother, what will they say? How will they feel?

I guess we'll cross that bridge, prayerfully, when we get there. We are close. Gabriel is extremely observant. Until then, I will educate and instruct my own children on the ways to play with others different from us. That's a lesson we all need to review from time to time; adults and children alike.