Monday, November 7, 2011

A step forward, a step back and drawing the line...

Cha-cha is working so hard in his therapy and day to day life trying his best to talk more.  He is doing a lot of copying what we say and trying to answer more questions when we ask them.  At school, he is talking more than he ever has - even joking around telling his teacher that only Daddy and Bee-bee sleep at home and that Mommy sleeps in the car.

The difficulty we've been having lately is understanding what he's saying.  With the increase of vocabulary and words, the ability for us to understand his intelligibility has decreased.  Thankfully for now, his frustration hasn't increased, or we'd really be in trouble.  It's just that sometimes, my super powers for reading minds fails me.  Cha-cha will say something and I just look at him and nod my head in agreement, hoping that I'm doing the right gesture.  School and his speech therapists are also noticing this.  Thankfully, he's a laid back kid, who doesn't seem too bothered by it - but it's frustrating for everyone involved.

An area we've made progress on the past week is Cha-cha's sleeping.  Since August when we took the crib away, Cha-cha's been sleeping in our bed or falling asleep while hubby has been driving around.  It's been exhausting, and hubby and I came to our breaking point and made him cry it out last week.  It sucked, but last night he actually didn't even protest when we put him in his bed and shut the door.  Tonight was easy too - he only came to his door once to open it.

Something I'm struggling with is dealing with a child with CAS and SPD.  Don't get me wrong, we could be dealing with a host of different issues and we have a very healthy boy on our hands...but the looks from others when he's laying on the ground, the comments of him not talking or "when is he going to get better?" - it hurts.  Maybe people aren't staring, maybe they're admiring my children - but sometimes, when my sh*tty committee is working overtime, any stare or gaze in the direction of my children feels like a pity look.  Hubby usually tells people he's shy; my way of dealing with it is to talk about the CAS and SPD, however I usually get blank stares or the questioning of, "Oh, he'll talk and be normal...right?"  I think when I'm feeling upset about it all, I may need to use hubby's "shy" route.

Lately, we don't know if Cha-cha's refusal to put on shoes or wear a winter coat is from his SPD - it could be, but at the same time, I think this 32 month old is playing us.  He'll put on a coat for a bribe or for his teachers at school, but for us - he refuses, then he will go outside and lay on the ground and say his word for "cold" and look at you with a disapproving look.  You want to scream and yell - but it doesn't make the situation any better, so I tell him that it was his choice not to wear a coat and move on.  However that moving on thing is hard - especially when you have a 38lb, 40 inch 32 month old that refuses to walk.  Have I mentioned that we have a giant for a son who also has low tone?  So when you carry him, he is dead weight.  He doesn't wrap his arms around you or shift his legs around your hip - he just hangs.  I've resorted to the stroller - but again, he's so tall, he can put his feel on the wheels and stop the stroller from moving, which leads to a pop-a-wheelie ride on the back wheels.  Graco and Chicco need to start making strollers for giant kids.

It's a frustrating thing, having a child with special needs - no matter what the disability's hard as a parent to know what's the disability and what's the personality.  How much of all of this is being two years old?  How much do you need to take with a grain of salt, and how much should you really pick your battles?  You never want to say, "Forget it," because that would be turning your back on your child - but at the same time, you don't want to spoil them and ruin them for life because you gave into him not to wear his coat.  Then again, who's life has been ruined for not wearing a coat?  All the time, I question myself with, how much can he really do vs. what can't he do?  Do you make the excuse that he can't, or push him because you want him to do it just like the other "neurotypical" children?  However, you have to remember and accept that he's not neurotypical.  You have to redefine what is "normal" and if you have previous children who are neurotypical, you have to rewrite that definition...and you will probably second guess yourself a million times. ;)

1 comment:

The Cookiegal said...

I am always in awe of people with children that have special needs. Despite all we went through this last year with Alexander, there was always a glimmer of hope for a cure. There is no cure for what Cha Cha has, but there is always the HOPE that things will get even a little better. You are a great mom, and Cha Cha is a great boy. He will do great things in life! It won't always be easy or "normal" but it will always be GREAT!