Tuesday, April 26, 2011


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).

Saturday, April 23, 2011

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.

Thursday, April 21, 2011

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.

Monday, April 11, 2011


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.

Monday, April 4, 2011

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:

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!

Starting Fresh

One thing I work really hard to do with Sam is to avoid holding a grudge. Think about it - when we have fights or tough times with other adults, those incidents hang over us the next time we interact. We may respond with anger or sarcasm because the previous interaction is still in our minds. I can't do this with Sam. He is not thinking about the fact that five minutes ago he spit in my face when he comes and asks for a cookie for the hundredth time or when he throws a bunch of blocks. With Sam I think it is important to approach him with the right attitude each time. I try try try to keep my tone positive at the start of each interaction. Sam (like many typical kids) feeds off of negative attention. There is something about the adrenaline rush that often fuels him to repeat the things he is scolded for. So every morning and at every new interaction I try to remember to be glad to see him and to act as if he is going to be appropriate.I think that this is an important thing to do even with typical kids. Children are so much in the moment that to cloud our resposnes to them with previous negative feelings will just confuse them. I am not always successful with this but I try.

Friday, April 1, 2011

She said it best. . .

This post is a downer. I have some happier ones brewing in my head for another day. This post sums up a very lonely feeling: http://severedisabilitykid.blogspot.com/2011/03/to-be-cared-for.html I feel a little guilty comparing how I feel at times to the feelings of someone whose child is so medically fragile. Sam is physically healthy, it is his cognitive and behavioral issues that keep us (mostly me) isolated. The idea of being cared for is very powerful. It isn't that I want someone to wait on me or take care of all my needs- far from it. It is just that disability often take from you those moments of warmth and comfort that you get in those situations. It isn't about getting a massage or a spa day to "do something for myself". Those moments may be comforting but the provider is working for a fee. There is no real bond that is being nurtured there. One of my happy memories from before the days of Autism is sunday dinner with my parents before their divorce. Sunday dinner was often roasted chicken, roasted potatoes, peas and salad. In my house we were always expected to be present for dinner (unless there was something big going on). We almost always ate together at the table. We were not always happy with each other but there was something very warm and soothing about that meal - prepared by a mother. I can't go home anymore. A couple of years ago my parents seemed to change and then they divorced. Neither one has a house that is "Sam proof" so we can't visit. My roommate in college tried to re-create this for me one weekend. I had gone home to visit my parents for the weekend but I had to catch a train back to NYC before dinner on Sunday. I told her over the phone how sad I was to miss dinner and when I got back she had cooked the full meal! We sat together and ate dinner. Imagine that - that feeling of being cared for. To enjoy something quietly, warmly. Or imagine going over to a friend's house one day, turning the kids loose with a toy box and sitting down to catch up over coffee or tea stopping only to aid in the occassional kid dispute. Not wondering if your five year old is drinking the toilet water or eating the house plants. It would also be nice to provide more of these moments to friends and family. To be able to concentrate on her and be in the moment with her. I love being a mother. I even love being Sam's mother (though it may not always sound like it). I adore him even when I don't like the things he does (his most recent addition to his stims is spitting - really really gross). I enjoy the role of caretaker but I miss the moments that nurture other relationships. I don't know if this post clearly communicated what Claire's post made me think about. I hope it makes a little sense. And I agree that the shower is a great place to let it out. Let any tears go down the drain because letting them linger doesn't help anyone.