Another ramble

I just wrote this whole blog on how great my weekend was and as I published it, I listened to the sound of Ashton once again screaming his head off. So I decided I really need to vent, because all the surface stuff like organizing and weight loss, well it doesn't really matter as much as it may seem. It's all unimportant little stuff.

Life with Ashton, boy oh boy. I try to explain to people I really try but I am not so sure you get it? it's hard to explain so I will compare him to an onion LOTS of layers and some of the layers make you cry. He is over emotional, high maintenance and I assume that's where the phrase "special needs" comes in. I really try to explain to people how he is sensitive, and cries so much but I know people have their own lives and probably don't understand. If he's up at 7 a.m till 7 p.m, he cries about 6 out of the 12 hours. Shaun and I try to understand him and most of the time we are wrong, and it's a "that's not what I wanted mom and dad" cry. It is very draining emotional, and extremely stressful.

I don't want to hear that you know what I mean, because nobody does. You can't compare him to any other kid, except of course another Cardio-Facio-Cutaneous one.

He cries when we change him because he is hyper sensitive, he cries when we move him, he cries when the other kids comes too close, he cries if there's a show on HE didn't ask for, he cries when he's hungry, or thirsty, or his bath is too low, or he needs a new toy, or he's bored. His main issues are communication and most of the time HE doesn't even know what HE wants so he cries for that reason too. And the 3-4 hours a night after we put him to "bed" (I HATE bedtime)he doesn't want anything he just cries and cries and cries, and he wakes up 6-12 times a night crying too.

Aside from crying he is very defiant in therapy and it takes energy to get him to do things like push his buttons on his tech talk, and repeat words. Textures and things are tough too he is not too open to that stuff. We are working on using scissors and markers. He doesn't like play dough anymore and he got over painting. We also try to push his boundaries with movement by swinging him on a blanket and making him lay on the floor on his tummy. He doesn't much appreciate it but maybe in the long run it will be worth it.

I spend at least an hour everyday doing therapy things with Ashton, sometimes it's as little as reading a book and making him repeat and prompting him to use his words. He likes his tech talk which went from 6 buttons to 8, soon to be 16. And used to like bath time and a massage, lately though he's not so into the bath part. we do floor play everyday at least an hour a day. Stretching him to his limit on either side reaching for toys etc...he is very high maintenance when he is on the floor, and all of the therapy needs one to one attention which is hard when you have 4 kids...

I dislike feeling like "oh he's just having a tantrum" because we have been told he is considered mentally handicap, therefore it may not be "just a tantrum". I KNOW as his mother there's more to him, he is not a regular 4 year old. When I discuss his issues with his therapists they tell me he is definitely not unlike most special needs kids, in fact they all react differently than regular kids.

This was just a vent, as I listen to him cry in is bed as usual...I hope he goes to sleep soon
I really want people to understand how hard it is to raise Ashton, thanks for reading.