Thursday, August 15, 2013

Special Needs Struggles

I'm not really sure where to start this post. Other than to tell you the other day I was rocking Laynie to sleep and Addie was in the bathroom helping Cade get ready for bed, brushing his teeth, I believe. I hear from her in the rudest and most demanding way possible, "Cade, open your mouth!", and my heart sank. Not because Addie was being rude or ugly to him, but becuase she was immulating me. Kids are carbon copies of what they hear/see. I treat Cade that way, and I do, I know I do.

I work really hard to let Addie know that Cade is special and that God made her special becuase she knew that Cade would need her, and that it is our job to help him and love him. She is really a great sister! More than any other 4 yr old could be. God truly gave her to me, and to him. Addie loves to mother, and she will be an incredible mother one day! But who is teaching her? Me!

I started to wonder, why do I get so frustrated with him. And the truth is, I'm not. I'm frustrated at the cards he was dealt. There are days, I just don't enjoy being his mom, and it's not a reflection of Cade at all. When I think of Cade all I think of is the JOY he brings to my life everyday, the way he LOVES me and everyone in his life, how THOUGHTFUL he is, no like seriously thoughtful, how the CALLING on his life is great. His attributes like how much he loves dates, times, schedules, and how that is going to be very useful in his life. I LOVE that kid! He's cool! But on those days that I just don't enjoy being his mom it's becuase it's work, more work than I think an 8 yr old should be. Selfish huh? and who is paying the price for my selfishness? Cade. My joyful, loving, thoughtful, Cade.

Life is truly so hard for him, and there are days I think how crappy life must feel to him. But as his mom, I feel really crappy too, because I'm not loving him the way I think I should be. I honestly feel like his life is harder becuase of me. I yell more than I hug. I scream more than I tickle. I demand more than I spend time with him. I wake up frustrated with him and many nights put him to bed frustrated with him. I spend so much of my time advocating for tolerance and there are days, most days, I feel like the biggest hypocrite.

I was wondering in that moment I was holding Laynie, if it's just me. Am I the only special needs mom that feels this way? I mean every other mom I see has so much compassion for her child, and I want to, truly, I do! But I'm too busy being frustrated. I was wondering how other siblings cope? Are they always that thoughtful and compassionate as I see them, as they see me? Or do they struggle the same way I do? Do they go home and yell when they tell thier child for literally the 14th time to do something they do EVERY night? or do they patiently just tell them again. I would love to be a fly on the wall. But at the same time I fear it would just be me.

About, i dunno, 6 months ago, I was in Michaels, shopping, when Addie had to go to the bathroom SOOO BAD. As I walked to the bathroom I met a teenage girl standing outside the restroom with her basket. I had noticed earlier that she was with her younger brother, who obviously had special needs, and her mother. She reminded me so much of Addie becuase you could tell she felt partially responsible for him. The mom and the brother were in the bathroom. I sent my kids in as I waited in the hallway with my shopping cart with Laynie sitting in the front seat. As the mom and the brother came out of the restroom he got a drink of water and they all began to walk off, when Laynie caught his attention. He came over and hit Laynie in the head, as the mom yells out a "NO!" and does her best to wrangle him away. They immediately left. I wanted so bad to talk to her. To tell her I admired her bravery of getting out and taking him in somewhere. To tell her it was okay (i did tell her that but quickly as she hurried away).

So many outsiders don't understand why our kids act they way they do and I was just glad that it was my daughter that he hit versus someone else's that didn't understand. I cried for days. I wanted so bad for that mom to know I was tolerant, that I empathized with her. That I wanted to be her friend becuase we fight a similar fight. I expect that we should all be tolerant. I expect that everyone should think that even when a kid looks normal (like Cade) think that if they are acting out, it's not a discipline issue. That we don't know the circumstances and with nuerological disorders running rampant, this could be the issue. But the truth is they don't. Unless you know, live with, experience someone with special needs your mind doesn't go there.

I live with a son with special needs, and I wonder am I the only mom that struggles with feeling like a mom that isn't equipped to be his mom? I wonder does living with it day in/out desensitize me to the compassion? I feel like I'm compassionate towards others but not to my OWN SON. I think about Addie and how frustrated she gets and I wonder is that becuase it's her example or is she also desensitized to it? I want so badly to breed compassionate, loving, accepting children. I want so badly for Addie, Laynie, and even Cade to love the unlovely. To stick up for the underdog. To be friends to the friendless. But I know that my example is what is ultimately going to make the difference in the long run. My kids will be what they see.

So I think of Jesus, you know WWJD. Of course he was perfect, and should be our example. But he was PERFECT and I am not. I know that Jesus would be compassionate, I know that Jesus would heal, I know that Jesus would encourage others to accept and to love. I want to be that for Cade. I want to immulate Jesus. But I'm not perfect, I'm selfish. It's hard and so many days I'm tired of "fighting the good fight", but I continue on. Because Cade needs me. Because Cade has saved me, because Cade had changed my life, all for the better. There is nothing about Cade's presence in my life that has had a negative affect on me. I know as parents, even when you have typical children, no matter how great you are, you are going to screw up, you are going to wound your children. But I want so badly to be what Cade is to me, to him, a blessing, and nothing less.

So join me in praying for me, yes! Of Course! I want to be the best mom that Cade, Addie, and Laynie would ever need or want. I want to be kind and understanding to Cade and I want to teach my girls compassion and acceptance. But, Please, pray for all special needs parents, for strength, if nothing else. It's hard enough when you KNOW what's wrong with your child and how to better equip them to handle situations. But I live with an undiagnosed child, it's like shooting arrows in the dark as to what affects him and how I can make his life easier without doing everything for him. I have no idea what I am doing and I need wisdom!

Please join me in loving on the special needs kiddos you know and thier caregivers!
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