I love everything about spring... the warmth of the air, the buds on the trees, my neighbor's HUGE forsythia bush, busy nights at the ball field...
But I don't love what spring seems to do to Josh.
(Disclaimer: This post is not to gain sympathy or rant on Down Syndrome or complain about what God has done and is doing in my heart... it's just real life. You have been warned.)
Every spring brings out the worst in Josh. It has been documented by the school for at least a couple of years and this year is no different. I can always find something (medical) to blame it on... usually allergies (which I don't even know if he has and am not even sure how to find out)... and this year his hip... but truthfully, I really don't know what it is.
I'm undesirable to be around.
I always google 'respite in Maine' in May. I kid you not, you can check the history on my computer.
I know it could be a lot of things. I'm told over and over that behaviors = communication and I have even told OTHERS that about THEIR kids on many occasions. But it's just not easy. It's not even a little bit easy. Josh is always stubborn, but it seems to magnify as the trees bloom. And this year seems different. Worse.
I miss him terribly.
I miss his smile and happy go lucky hugs. I miss the chaotic sounds of boys wrestling in the living room and Josh laughing hysterically. I miss his silliness and I even miss him hiding things (did I just admit that?) because that, at least, was usually done in fun.
Right now all we're getting are no's and stops and whines and sit down and refuse to moves.
He seems so sad and I don't know how to help him. He doesn't even want to play with Abby and she's ALWAYS our ol' standby. He grunts at her, pushes her away... he's even been hitting her.
I wish, just once, that I could ask him to do something and he would get up and do it. I wish I didn't have to stand on my head and sing the ABC's backwards to get him to do the simplest of tasks. I wish he'd just comply... without saying no 60 times and being threatened that something will have to be taken away. I get SO tired of hearing my own voice... imagine what HE feels (well, I know what he feels because he totally tells me off all the time... I can't understand a word he's saying but trust me, he's telling me off).
And you know what stinks more? Trying to explain it to others.
I was just telling someone recently about all my woes and surely she just wanted to say to me "Susan, you're the mom, take control". I know that's what I'd want to say if someone told me they can't discipline their kid because the behavior gets worse. I mean... really. C'mon.
But it's true. We have yet to find a way to discipline Josh without completely losing him. We are late for school almost every morning because I 'lose' him and I can't simply pick him up and throw him over my shoulder anymore. I try to save the word "no" for emergencies but everything he does and says requires me to say no as of late. He tests my every single little bit of patience.
My mother paid me the sweetest and highest of compliments the other day (already crying and I haven't even typed the words yet). She told me "you're doing a good job with Josh". That's it. I'm sure she didn't know how very much I needed to hear those words... how I have gone over them again and again in my head since she said them... how much I appreciate the encouragement and love...
So why doesn't it feel like it?
It feels like I stink.
Right now it feels like I'm barely holding on. I hang onto every one of his little smiles and loud, boisterous (evil) laughs (which usually mean he's causing trouble) because I'm not seeing many of them. I kiss his head every morning and tell him how much I love that head... and I melt when he says "okkaaay... dat's awwkwwarrd"... and then I repeat it a few more times just because I love kissing his head.
I love him totally and completely and will continue to try.
All we can do is try. And trust.
I trust that God is doing a good work in me thru all of this. I trust that someday I will give testimony that I made it. I trust that God knew what He was doing by giving Josh to ME... the LEAST patient of ALL human beings. I trust the God that created me and Josh and even the part of Down Syndrome that makes Josh so incredibly stubborn... and I know that I know that I know that God can and will reach Josh where I'm failing miserably.
If you feel so led, please pray for us. Please pray for Josh's hip... that it will stop bothering him and/or that we know how to proceed in that area. Please pray for his attitude. Please pray for MY attitude. Please pray for our family as this affects every area...