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.

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.

Tell me something good....

...or how about I tell you something good....


Peter waves and says hi! Functionally... like he really means it! Yay!


During his first eval with early intervention they told us he had receptive communication (his ability to understand us) at the level of a 5 month old. I was sure they were wrong... but struggled with them being the professionals and all.

But he understands. As he gains more confidence and starts exploring more sounds and gestures he's proving everyday that he really and truly understands!

I'm in love  <3 p="">

A picture blog!

I've been meaning to post...

No... seriously... I really have!

I even started drafts! There is so much to write about, to document, to share... but lets face it, I'm overwhelmed. Since my last post we've had Beth's graduation, Jolie's PT eval, Peter's accomplishments and setbacks, and Xander's huge accomplishment! A lot of this is great stuff, and I still find myself staring at the screen. It's not that I can't explain what happened... anyone with an active memory can. It's more like I can't find the emotion around what happened and I don't want my own blog to read like a TV owner's guide....lol.

Beth's karate graduation was a success and a disaster all at once. I'm so proud of my pookie... but she struggled hard. There were far more people there than we anticipated... so we didn't prepare her well. We brought all of the kids.... Peter wasn't having all those people around him. Nope. Not even close.  So Mommy and Daddy took up post outside (extremely large glass windows made it so we could keep Peter from the crowd and still see Beth! Yay for glass windows!)

It was just too much.... too many people, too much noise, and not at all prepared....

After several trips outside (where Mommy and Daddy were keeping Peter and Xander entertained).... she made the choice to try again! Grammy was taking pictures... and she kept looking over to make sure Grammy was still there.  =)

She made the choice to demonstrate with Mr. Victor... all by herself!!

She's exhausted. It's been a long, long, long night.

But she did it! She made it through the entire graduation (with several hundred trips outside)!!!

For inquiring minds who really want to know what the other two kiddos were up to while we were soothing Pookie and Bubba....

 Princess Peanut (Jillianne) sound asleep with Papa watching.....

Prince Monkey snuggled close in his carrier and watched the festivities.... from outside. He really wasn't interested in the noise either.

So... what have we learned?  I think we've learned that we're not all going to be able to go to karate graduations. Jolie is graduating to yellow belt on 12/17, and I think maybe Daddy and I will take her by ourselves.   =)

Sometimes it all falls into place.....

The appointment tonight with Beth's new psychologist was amazing. I really feel like we connected and were heard and we have found someone who wants to help our child. The entire hour was all of us talking. Beth demonstrated her stress and aggression when she was asked not to play with certain games. The psychologist feels that Beth fits the exact profile for Asperger's and really stressed that Beth needs a neuro-psych evaluation. We absolutely agree with her, but our bank account really doesn't agree. Neuro-psych evaluations are really not cheap and aren't covered by insurance in most cases. So... we're working on that. In the mean time she is going to start seeing Beth on a regular basis. She's going to focus on bio-feedback, stress and anxiety coping skills, and how to communicate her emotions. I like that option because I'm really not comfortable medicating her... not until we've exhausted all other options.

Jake has officially been diagnosed with PDD-NOS. Beth's therapist said PDD-NOS is really the "we don't know exactly what it is yet" diagnosis. Peter's behavioral pediatrician is really great. I really like how straight-forward she is. She is even willing to see Beth as well. Peter is going to be starting ABA therapy through Early Intervention on November 3rd. It will start out as 10 hours a week and over time expand into 20-25 hours a week. I know this is going to be the very best thing for us.... but re-arranging life for everyone in the house to accommodate that is already causing tension.

Lots to update!

I'll start with the meeting with Beth's teacher.

I believe Mrs. B has the best of intentions. I believe she genuinely wants what is best for my child and I really appreciate that. I also believe, however, that 5 weeks isn't long enough for her to know better than I do. She agreed to the meeting and she did listen... and she did come up with a fantastic idea of having Beth journal when she's upset. She admitted that Beth is emotional but also believes that it is normal for first graders. I agree with that statement... first grade is hard and some kids really do have a hard time adjusting to it.

Here's what I know...

I know she didn't feel that burn. How do I know this? I know this because I've lived with her for 6 years. I've seen her reactions to injuries. I once saw her have an outbreak of hives so badly the pedi had a hard time telling what they were and she never even flinched. I understand that she told the teacher it burned when she was questioned about it. She's not even the one who told the teacher... it was her classmates. Let's go over real fast what really happened....

She ran her hand over the pizza warmer. She felt a warm sensation. One of the lunch aids saw this happened and looked at her hand and told her she was burned. They sent her to the nurse's office and the nurse most likely made statements regarding how it must hurt, and how they should run it under cold water to make it hurt less. She went back to class where kids saw it and told her teacher that Beth got hurt. All of this resulted in Beth realizing it must hurt.

So no, she did not feel that burn and arguing with me about it is not going to change that fact.

I know she is overstimulated during school. I understand that the teacher doesn't see this. I absolutely get that she is perfectly behaved and shows no signs of overstimulation (that the teacher can pick up on) at school. But when she gets home she is overstimulated to the point of hurting herself. I double checked with a fantastic child psychologist... this is normal. She's storing up all of her anxiety, confusion, and otherwise negative emotions for home.

Yes, I think I found Beth a psychologist. I already really like this woman. Beth's initial appointment is 10/25. Yay for that!!



Peter's eval is Monday.... if we can get a diagnosis we will start ABA therapy through Early Intervention not long after that. We definitely need this diagnosis... he needs the therapy.

Jolie had her screening at the preschool today. No idea how that went... will know more next week.

=)

The world around us...

I've been doing a lot of reading lately... anything I can come across in regards to autism. I'm not new to parenting an autistic child. I am new, however, to parenting two children with global delays.

So anyways, I'm cruising the great world wide web and finding blogs written by mothers of autistic children. I find myself getting lost easily in their stories and tearing up at the challenging moments. I understand their words, their situations, and their emotions... and I absolutely envy the way they can tell their stories. These women all see to have a gift of words that I could never possess. They write with such eloquence and feeling. I almost feel like my writing is choppy and awful in comparison.

Okay with that out of my system...

I emailed Beth's teacher today.  I formally requested a meeting between her, myself, and my husband. As of this morning Beth could only name 2 children in her class of 22 and said they aren't always nice to her. She says she plays by herself at recess unless the other kids ask her to play... and sometimes she plays with the kindergartners. I learned all of this by simply asking if she enjoys recess. I try really hard not to put ideas in her head. I do my best to ask questions in a way that doesn't imply an answer. I really want to make sure that whatever is decided is what's best for her.

Last Wednesday my baby informed me that she wants to shoot herself in the face. I have no doubt that she knows exactly what that means, but no idea where she got the idea. We don't have guns in the house. She doesn't associate with anyone who does. We don't watch violent programs on TV and we definitely don't expose her to violence.  She hasn't said it since and really couldn't answer why she would want to do such a thing. I didn't push it. Maybe I should have... but she was so frustrated and hurting so badly already that I couldn't make myself push it.

Hopefully I will have this all down pat in time for Jolie and Peter....