ups and downs

Ups

-We are having some success with medication (do I still need to give the usual speech about how I never imagined putting my child on meds like this. . .?). He takes a few but the one that has helped is Strattera. The neurologist said that it only seems to help about 50% of her patients who try it. It helps Sam mellow out a bit. Before Strattera he was so overstimulated and uncomfortable in his own skin then he was jumping up and down constantly, flapping wildly, vocalizing in a high pitched scream and running back and forth like a wild man. His behaviors are still difficult but the absolute frantic mode in which he used to operate has been brought down a notch. He is also sleeping better. Most of the time if he wakes up, I can take him to the bathroom and then put him back to bed. He still has 4 am mornings sometimes though.

-Sam will likely get a significant increase in his home support hours from the district at his next IEP meeting. I sent in a couple of carefully worded letters and documented, through notes and videos, Sam's dangerous behaviors.

-the baby is smiling and "chatting" with me every chance she gets.

downs

-Sam continues to obsessively destroy our books. He empties the shelves multple times a day and throws the books around the house. He has no alternate interests so diverting him is impossible. He sometimes take a break from throwing the books to chew them. The behaviorists are getting on my nerves because they keep offering suggestions that don't work. They say make him pick them up. We have been dealing with throwing for years and we have tried that. It doesn't work. It has NO effect on whether he will throw again. In the classroom they have determined that making him "pick up" doesn't work so why do the same group of people keep telling me to do that at home?

-Sam has done a few things lately that have hurt Maya. He has knocked her off a chair, pinched her arm until he left a mark, yanked her arms really hard and made her cry- to list a few. His concept of "other" is limited so he doesn't understand he might hurt her.

- I am feeling the effects of fatigue from the past few months. I cannot remember that last time I had more than 3-4 hours of sleep. It was hard to sleep during the 3rd trimester but with the addtion of the broken arm it became nearly impossible. Now the arm is getting better but I have a nursing baby who does not sleep through the night. Often both of the older children need to go to the bathroom during the night and they both need help. I went back to work when the baby was just about 7weeks old. It is too much. I feel stupid saying that considering what is going on in the world but I am just barely functioning. The combination of nursing all night, getting up at 5:15 to get all the lunches ready, get dressed, nurse again and get the girls out the door by 7, then teaching ( and trying not to leak milk in front of the students and trying to find time to pump), then coming home to manage Sam and various therapies and the house and to worry over Mark's massive financial issues that never seem to improve - too much. I am forgetting things, dropping things and by the time I put the kids to bed my vision is blurry. I am hoping that summer break brings some relief.

Haircuts

Like many children with Autism, Sam hates to have his haircut. It puts him on sensory overload. His school has done something brilliant (which is nice because on a few other issues I have a list of complaints). One of their former employees (I think she was a classroom aide) work in a hair salon. She comes to the school twice a month. Parents, for a small fee, can sign up for as many haircuts as they want their child to get. The children then get their haircut in school with their teachers and aides on hand. The new photo of Sam is with his hair freshly cut. One less thing to try to do around the house!

6

Today Sam turned 6. I still remember the insane strength of the bond I felt as soon as he was born. I think I actually felt physical pain when he was away from me. He was a mama'a boy through and through.

Today Sam woke up at 6. He was snuggly and sweet for a few minutes and so I told him it was his birthday even though he didn't understand. Then he started grabbing the books off the bookshelves and throwing them (his new obsession). Mark tried very hard not to yell and just made Sam clean up every few minutes. The cleaning up has no effect on the behavior but we do it anyway. Then Sam went to school without the cupcakes I wanted to send. I realized when we got home from his dance class that I didn't have enough eggs and I was too tired to go out so late. I am hoping to send them later this week. I couldn't bring them later in the day because it was my first day back at work since the baby came.

Sam got dropped off at the sitter's house and I picked him up at 3:30 with ice cream cake in the car. He seemed excited about that idea. He decided to start pinching Maya on the car ride home. I hope this is not his new obsession because I have no way to separate them and she doesn't deserve to be hurt every time we go out in the car.

Sam spent the rest of the afternoon throwing books and trying to play in the toilet. I spent the rest of the afternoon trying not to lose my temper and nursing the baby who didn't want to drink bottles while I was at work.

I wish for his birthday that I could transform into a better mom, someone who knows what to do about these dangerous behaviors and how to give us all a happier life. SO I am sorry, Sam. I hope that todays feels a little different for you in a good way so that even if you don't know it is your birthday, you know that you feel happy (even if it is just happy about ice cream cake).

Bad Bad Bad

The other night, right after I brushed Sam's teeth, Sam leaned over and let go a glob of spit onto my slipper. THen he gave a little jump, flapped his hands, and said, "bad, bad, bad!" (which from Sam sounds like "ba, ba, ba"). Naughty boy.

Finding Community

So my quest to find a church in order to feel commected to a community has been a big failure. The churches I have visited or contacted have all been very nice. The one I attended - a very small UCC church - was so welcoming I feel bad not going. The pastor is great and I still get his newletters by email. The problem is that no matter how badly they WANT to be a great place for a child like Sam, they just can't without disrupting the experience for everyone else. In most churches I have been to kids sit for part of the service then go to class or chapel. Sam can't do that. He can't participate in a class in real way. I could go to church on my own and I may from time to time but the community aspect just isnb't working. I can't join committees, go to choir practice, or help with the rummage sale. I just don't have the ability to work full time, take care of three children and manage Sam's issues AND do those things - especially with Mark working most Saturdays.

BUT I found a great community. Sam takes a special needs dance class at a nearby dance school. The other moms/grandmothers are a great bunch. There is one boy who is much like Sam, a little girl who is nonverbal and somewhat delayed, twins with Down's SYndrome, and a girl who is autistic/multiply disabled. There are other kids who come and go but the parents of this bunch are there on a regular basis and I really look forward to the hour I sit on the floor and chat with them. Sam has been a little off the class lately but I am pushing him to keep going mostly for my own sake!!

The only time I feel on the outside is when they start talking about vacations and special needs camps. I am the only one in the group who has to work full time and even with 2 incomes we don't make enough to take trips or send Sam to daycamp in AUgust. These other moms take trips and some even hire therapists to go with them so they get a break. whoa. I did get a lead on a reasonably priced special needs camp for AUgust but so far they haven't gotten back to me.

Spitting

Blogger won't let me write in paragraphs. Sam's most recent addition to his constant stim routine is spitting. He pools his saliva in his mouth then sticks out his tongue and lets it drop. Sometimes he then rubs the puddle with his foot and other times he lets it stay. He used to do this every so often but it wasn't enough to get worked up over. A couple of months ago his spitting began to increase in frequency. Now it is almost constant. He has also started blowing raspberries in my face when he leans in close. Lovely. The spitting bothers me but it bothers my husband even more. I don't think Sam knows what I mean when I say "no spit". Either that or it is so far beyond his control that he can't resist. Yelling about it is useless. His school has him on a behavior plan for it and they are seeing a reduction. I haven't seen any reduction at home. I have asked for suggestions for a home behavior plan but I am having even less luck getting home program support than before. Grrr.

Big Sister Present

This is the doll that Maya got when she became a big sister. This is where you can purchase your own custom doll:

http://www.etsy.com/shop/craftymommy

Don't worry, we got some big brother stuff for Sam too but it was mostly chewies and I don't have a link for those!