Tuesday, March 22, 2011

Family

 I know I need support. Support outside of the ABA, Speech, OT, PT, and every other therapist you can think of. I wish, and I mean wish, that we could go somewhere, attend events, and socialize. I kind of miss summer cookouts, birthday parties, and the like.

This is on my mind today because we have been invited to my step-brother's daughter's first birthday. Yep, this makes her my niece. I've seen her twice since she was born. I can't really consider that close family. I have one sister, 4 step brothers, and 3 step sisters. Between them I have at least 12 nieces and nephews.... and can't say that any of them (except maybe one) see me and mine as family.

This makes me sad. I know a lot of it is because my priorities are insanely different than the rest of the "family"'s. They, for the most part, do not need to consider what the ultimate effect is going to be on two of their 4 children. They don't have to know exactly how large the event will be, whether it will be indoor or outdoors, if there will be a quiet area, or how long the event is expected to last. They don't have to worry about judgmental looks, odd behaviors, or social inappropriateness. Yes, this all happens. One way or another it usually ends up getting back to me. I brush it off, but it still hurts to know I will never have a true family atmosphere for my kids. They will be tolerated at the proper times... no one will dare be outright mean to them, but they won't be understood.

This may be my fault. I have systematically declined every invitation I have received in the last 3 years with the exception of two or three events. Each of these events have confirmed that I made the right decision declining the others. In all of the cases I didn't decline I spent the majority of my time ignored and left to chase my kids. I can chase my kids and be ignored at my own house... it's not at all fun doing it at someone else's house.

In the end I guess what it all means is that I want to go places, I want to socialize, I want my kids to socialize... to have friends, to have a support system. I want to socialize with people who aren't going to talk about my kids in a negative light at the end of the day. I want a family.

Wednesday, March 9, 2011

It all falls down....

I have been unbelievably quiet.

Yep, this is pretty uncharacteristic of me.

I'm ready to write again. So lets recap, shall we?

In November of last year, when I was semi-consistently blogging I was working full time, working on a college degree online full time, struggling to get Bubba's ABA therapy set up (while not letting the change in my routine kill me), working with a psychologist for Poohbear, looking for a pychologist for Bean, and keeping a close eye on Monkey.

Not a lot going on there....


I had been warned several times by close friends that I wouldn't be able to keep that pace long. It turned out to be true. I failed both classes, my back and neck started hurting with really no explanation, my blood sugar shot up over 400, and my blood pressure refused to leave the dangerously high range. I've been out of work since January and its looking like I may lose my job.

On the kid front not much has changed. Bubba gets his ABA about 15 hours a week (10 hours less than ideal but the state cut the budget... gotta be happy for what we can get). He also has group therapy twice a week, speech once every other week, and consults with OT and nutrition. Monkey is now seeing early intervention for some concerns about his expressive and receptive communication so we have that once a week now also.

We no longer have a decent therapist for Poohbear... and we never did find someone willing to work with  Bean.  We had Bean evaluated by the school system and although they saw quite a few concerning behaviors they were unable to accept her for early entry. She starts kindergarten in the fall.

I took Monkey to the doctor this morning for his well baby visit and it turns out that he has 2 bad ear infections that I somehow missed. Dr and I discussed Bubba's violent tendencies and she is calling UMASS to see if they have any suggestions on how to handle a very violent two year old.  Monkey has a specialist appt tomorrow for his hypospadias (at 8:30.... in Worcester..... morning traffic is going to be so bad).

So no, not much going on.