Progress?

So, Trouble turns three today. That makes 3 children aged 3, that are not triplets. Yeah, that’s fun. Anyway, we had his birthday party on saturday, since today is well, obviously, a school/work day.

What I thought would be a small gathering of a few really close family members turned into a really LARGE party. 10 children, and about 14 adults. It was chaos to say the least.

We really did have a good time. Trouble lost interest in his gifts at the first sight of Buzz Lightyear under the paper. Moosey and Mad opened the rest for him. They loved it. And let’s just be real here, they are going to play with the toys as much as Trouble. So really it was their stuff too.

Mad needed to take some time away from the party. That was just fine with me. He would cover his ears or his eyes and start whining. Then I knew it was time for a break. I would ask him if he wanted to walk to his room with me. He always said yes. Then he would say “Squeethes” and I would give him some deep pressure hugs. Then he’d be fine and go back out to the party. I was so proud of our handling that situation.

Everyone kept asking him questions and trying to get him to play/sit near them/snuggle/eat. He was just getting so upset with them all. Finally, he put his hands over his ears and yelled “NO MORE QWESTONS!” WOW, good for you kid.

People, at least in my family, don’t seem to understand what this is like for us. We are perpetually on high alert. Always code orange, if not red. Where did he go? Did he take off his diaper again? Did he steal the paper towels again? What’s in his mouth? Is he going to be ok? Is insurance going to cover all of this? ANOTHER, waiting list? 4 appointments a week, home based teaching, etc. It never freaking ends. Is it enough? When is it enough? Am I failing him? Have I ALREADY failed him?

Then you add Bubba’s needs to the list. Kids at school seem to have taught him some really terrible terrible words. He uses them frequently. We are working on showing him how to control himself, but he has almost no impulse control. $300 dollars on prescriptions this month, these ones better help. 2 appointments this week. Teacher meeting. Reinforce behavior. Give visual clues for behavior (which we have to catch as it’s happening). Snuggle, deep pressure, breathing techniques. I didn’t get him help when he was little like Mad. I failed him for years… It could be easier for him. If only I had done something before.

Gertrude is not a little girl. She is heavy. Like her Mom and Dad. Not excessively so, just a little thicker. She is getting teased mightily by some little boogers in her class. How can I help her? She isn’t fat.. Have I failed her, too? I’ll kick those little booger’s butts.. ok.. I won’t. Now she’s crying again because she thinks she is fat and ugly and that she has no friends…. SERIOUSLY!! Is this my genes? Did I lose her in the shuffle? Shouldn’t I have taught her to believe in herself? Have I failed her too?

I suspect we are going to lose our house. I can’t make the payments with everything else that’s going on. I’m scared and burying my head in the sand. I can’t seem to make the money work out.  Between copays, medications, therapies, Mad’s other medical bills, my Medical bills and prescriptions, Hubby’s prescriptions.. food, broken cars, broken water heaters, two job loses. How far can it stretch? Another failure.

I get home from work and one hour later, hubby leaves for his job. I forget what his arms feel like. Does he still love me? Can we survive this? I want my husband.Why won’t he research this with me? Why doesn’t he ask questions? I don’t understand how this doesn’t affect him…I want my husband back. I WANT MY LIFE.

After that party, I slumped on the couch. Feeling like we have just celebrated another year of survival. I looked over, and there was Mad. Holding his Woody doll in his lap. He took Woody’s hands and made them bang on the toy keyboard. Did my boy just play? nah.. must be a coincidence. Aw, hell… “Mad, what are you doing?” He said the sweetest thing I have ever heard…

” Duddy pway punano” (Woody playing piano) OMG. I don’t even know what to say to him. I just stood up and started whispering for hubby to get in here. This was the battery recharge I needed. This is why I get up every morning and go to war. A constant internal struggle of what needs to be done vs. what I want to do. I never know if it is the right thing or not. The choices are mine to make, doesn’t that make the results my responsibility?

I’m petrified of another failure.

A new tactic?

Mad-Hatter eats paper.. There’s a sentence I never thought I would write. He eats it ALOT. All kinds. He even stims and squeals in excitement when we bring out a new roll of paper towels. We have never been able to break this habit or do anything to get him to seek this input elsewhere. His OT feels that it is a sensory seeking behavior. We have most doors on our main floor locked from the outside and carry around a set of keys to open doors. It seems to be the only way to keep the older children’s rooms safe and off limits to the little book eater.

We have been trying for a week or two to leave the bathroom door unlocked so that we can teach Moose to use the potty. This is not going well at all. He has eaten and ripped apart at least one roll of toilet paper per day since we started our “open doors” campaign. Yesterday we decided the mission must be aborted. He just isn’t ready. Anyone with ideas or help would be appreciated here.

Mad was chewing on some TP saturday and I was at my wits end. I finally just asked him WHY he eats paper. He answered in his squeaky, high pitched voice “Cu I bi!” Which translates to “cause I bite!” Well, DUH. I asked why he bites. He looked at me for a minute (ok, ok. He looked at my forehead, but heck… it was at ME), “cu i fea va va gu!” (Cause it feels very very good!). Ah.. um.. well… ok, then.

People, he actually answered me! A sentence, about how he feels! That’s huge. Not particularly helpful, but huge.

We have tried so very many things to help him get his sensory input. Brushing, deep tissue pressure.. e-v-e-r-y-thing. Nothing is helping. If you tell him, not to eat paper, that paper isn’t for eating, he answers “oh!”  and spits it out into your hand. But then he does it again a minute or two later.

Sometimes I think he is screwing with me. Seriously, anyone been down this road?