A million steps back.

We are officially without a BCBA now.  We let ours go today due to a string of unfortunate events that led us to that decision.  I'm mad as hell and frustrated.  Things were going so well.  The kiddo loved the girl who was working with him.  We all loved our BCBA, but shit happens and we are back to square one.. yet again.  I don't want to go through this process again.  I don't want to make the phone calls, listen to people say they are too far away or have them not even return my phone calls. 

Our BCBA did say he will help us find someone new, but I'm really  not holding my breath.  I feel so defeated right now.  And through all of this frustration, it's the kiddo who is really going to feel the effects of this.  It's him who is being left in the dark because several adults didn't hold up their end of the bargain.  It's his heartbroken face I had to look into when I had to tell him that we will no longer be working with Mary, the girl who had been working with him. 

I don't want to do this all over again.  I sure as hell do not want to find someone and have my child bond with him or her again and then have them up and leave again.  I'm not sure I can put my trust into anyone else right now, but we really need to get this set up and going again.. preferably BEFORE school starts.  So, I will suck it up and go from here.. and hope someone will be easily able to pick these pieces up before the kiddo regresses any from all this drama.

what will the future hold?

I find myself wondering lately how the kiddo is going to survive middle school and beyond.  How will he navigate the social hierarchy of each? He has no concept of social boundaries, he has no clue that kids aren't really playing with him.  Will he by then?  How will he navigate the complicated and confusing adult world when the time comes?  He's going into 4th grade in the fall and that alone scares me, I can't even imagine how I'll be feeling when he starts middle school in another two years or high school in five years.  He's almost 9 and is so oblivious to the world around him sometimes.  Kids his age are starting to develop deep friendships.  I still talk to my best friend from third and fourth grade and I moved away from there before fifth grade.  20 some odd years later, we still chat on facebook occasionally, she even traveled here to be at my wedding 13 years ago.  Will he find a friend like that?  Will he develop friendships so deep he'll never completely lose contact with them, even after we move away once again?  I wish I knew for certain that he was going to be ok.  I wish I knew for certain we would always have kids who are so incredibly understanding of his differences that they can look beyond that and see the person he truly is. 

Right now he's in the summer enrichment program at school.  Despite a few behavioral issues, he's doing alright, but the kids don't really care for him.  It breaks my heart that they find him annoying.  Yeah he is at times, but so is everyone else at times.  He's probably the youngest kid in there, which doesn't help matters anyway, but I wish the older kids could realize and understand that he just needs their approval and support, not to be made fun of and shunned because he's annoying them.  I wish the neighborhood kids could understand that he's just like them.  I wish he could really play with them and not just be playing around them. 

I'm frustrated because I don't know what to do to make things better for him.  I want him to have a happy life and I want him to succeed in everything he does, but it scares me that he will not find true happiness in the world around him.  I want him to have every change he possibly can in life and I wonder if he really will. 

I wonder what other people think....

We went to dinner tonight.. the kiddo, the hubby, my mom and me.  The kiddo and I go with my Mom every other Friday when she gets paid, tonight the hubby is actually done with working nights for awhile, so he was able to join us.  There was a family sitting at the table behind us.  There was a little girl, maybe 2 who kept looking over the seat at the kiddo.  Several times he ducked under the table because she was looking at him.  LOL  He kept saying that girl is looking at me, she needs to stop.  I told him to just ignore it and stay facing the table and so on.. THANKFULLY he wasn't screaming it, but I'm sure the Mom heard him.  She didn't say anything to us about it, but I did hear her discreetly telling her daughter to stop turning around after one of the times the kiddo said it. 

Now, he wasn't trying to be rude, he was just uncomfortable with it.  That lack of a filter in him, he just says what he thinks.  I was doing my best to keep him quiet and calm.. but I really wonder what that Mom thought.  I wonder what the conversation was like in her car after they left.. When the kiddo got up to go to the bathroom, she did give him a funny look. 

It really makes me wonder what other people think when they see kids like mine.  If I see kids like mine, I always give a knowing smile and don't act like there's anything out of the norm going on.  I am incredibly patient with other special needs children (why am I not as patient with my own?).  I guess I could have said somthing to this Mother.. not to excuse his behavior but to explain it.. but then I wonder if she would have thought we were all a bunch of loons! LOL

Ah well.. another trip out survived.. another chance to help him navigate this strange world he lives in.. even with the funny looks and the toddler who was annoying him.. we survived and it didn't end in a screaming tantrum, so all is good...

The End.

We are done with third grade.  We are done with the awful teacher who has no clue how to deal with special needs students.  We are done with the stress and drama and unhappiness this year has  brought.  I feel the need to celebrate this ending somehow.. The kiddo wants wings from Pizza Hut, so maybe I'll swing out there and pick him up some as a congrats for surviving third grade for him.  I feel like a weight has been lifted... we have wasted so many tears, arguements, and stress over this school year since we moved here.  Now we can put it behind us.

I am looking forward to starting fourth grade with a fresh perspective.  I am looking forward to no longer having to deal with the crappy teacher and having a teacher who has so much patience for special needs children. 

Now let the summertime fun begin....

Looking in from the outside..

Today the kiddo had an end of the school year pool party for his class and the fourth grade class.  Our school has one class per grade and small class sizes, so this is a fairly easy thing for them to do for the kids.  Anyhoo.. I brought him to the pool to meet up with his classmates for a very anticipated pool party.  I sat on the sidelines and watched him swimming with his classmates.  A sadness washed over me as I realized he's not really playing with them, he's playing around them.  You could tell very obviously which kids were close friends and the kiddo just went from group to group, but not really playing with anyone.  I really haven't noticed this until now.  It doesn't bother him, he still wants to play with everyone.. but I know eventually the kids will get older and eventually mean and I worry it will all cause him pain. 

I don't really watch him while he's outside playing around the house.. but now I'm going to make an effort to.. I wonder how he is with the kids in the neighborhood.  I think this will definitely be something we work on with the ABA therapist.  The whole thing just made me sad.. made me realize once again that he's "different".

childhood dreams

So an old high school friend found me on facebook last night.  We chatted for a bit on chat.  He asked what I was doing these days.. did I become a writer or journalist like I had wanted to???  Funny that's what he remembers about me.  I'm sure a lot of people would remember that about me if asked about me in high school.  I was always writing.  I took creative writing three times in high school, I worked on the paper, worked on the literary magazine and worked on the yearbook.  I constantly wrote poetry and stories.  Now I can barely get my thoughts onto paper (errr on the keyboard?)  It's funny how my dreams have changed since then.  I'd still love to publish a book, but my ideas on publishing a book these days are far from the fiction i wrote in high school.  It's really been on my mind since I chatted with him yesterday.  I wonder how many of us truly have fulfilled our childhood dreams of what we wanted to be when we grew up.  High school was a long time ago, longer than I care to admit, but the teenage version of me would have laughed at the adult version of me.. wrapped up in the world of her amazing 8 year old.. married to a sailor of all people.. I swore in high school that I would never get married until I finished college and had a career of my own so I had something to fall back on.  I have no degree now.  Hell, I don't have a job.  Yes, the 15 year old me would certainly laugh in the face of the 33 year old me.  But ya know what?  I do love my life.. despite it being nothing like I ever dreamed it would be.

Our wild and crazy week!

Let me give you a little peek into the craziness that was my week last week.

Monday afternoon.. Friend M calls me and tells me she has some bad news for me.  Our friends J and B were out on a boat and they never returned and they were with J's brother E.  Spent the rest of Monday looking for any news on them until I finally crashed late at night.

Tuesday.. more praying and worrying about our friends until my friend M called to tell me by the grace of God they had been found!  Joyous night!  Stayed up and watched live feed on a news station in Florida of them arriving, couldn't fall asleep until I had seen their faces and saw they were ok. 

Wednesday.. spent the day smiling, so happy our friends were found and they were alive!!!  Until...

1 AMish on Thursday morning.. friend M calls and wakes me up after falling asleep only an hour before.  Her house is FLOODING and can I please come get the kids so they can stay at my house.  So I throw clothes on and drive to her house to find the fire department there and water pouring out of her front door.  The kids are sitting on the couch with dazed looks on their faces.  I take them home, leave them with the hubby and head back over there and wade my way to her back porch.  We wait until 3:30 AM for  the housing maintenance guy to show up and when he does, he has no clue what to do.  Meanwhile her bedroom is soaked, as is her dining room, kitchen and entryway.  So we wait for more people to show up, they say oh it was the toilet.. um ok.  And they finally get her temp housing and off I go to bed around 430.  Fall asleep at 530ish only to be woken up at 7 by her daughter asking if it's ok to let my dog into our bedroom. 

After hubby gets home from muster, he goes to get their dog who is now staying with us.. a 100 pound rottie.. who is the sweetest dog but still very puppy in her actions.  My dog is old and likes being the only dog in the house.

The theme of last week seems to be water for sure.  My poor friend has a smelly house now with ripped out carpets and holes in the drywall.  They are staying in temp housing  but are going to insist that housing move them.  For them to properly fix all the damage, they need to rip out a whole bunch of stuff and that could take months!  Hopefully they will get them moved somewhere else.  My friend is so stressed and freaked about the whole thing.  And for the record, we doubt it was the damn toilet that caused such massive flooding in her house.. maybe the pipes connected to the toilet, since housing has been in to fix it three times in the past month, but not the toilet itself. 

Here's to hoping for a much calmer week this week.  Nothing to do with water would be a bonus.. unless it's some quick summer rain showers that make it so I don't have to take the time to water my veggie garden daily.

I think I want to go back to school.. again.. haha

I've been helping a friend of mine deal with a crappy ineffective IEP lately. I've given her tons of advice on how to handle her upcoming meeting. I've given her the resources she needs to understand the IEP and to understand exactly what her son needs. It has been a very fullfilling experience. I am seriously considering becoming a special education advocate. I enjoy helping other parents so much with these things and I think it would be a good career move for me.

So I'm considering going back to school. I am so close to atleast obtaining my associates degree. I would love to be able to take some classes on educational law and such too. I'm consdering going to school to get my paraprofessional certification, so I can also work with special needs children in the classroom setting.

Someone told me a few months back that she could really see me in a advocacy position. I'm starting to feel that way too. I'm not sure where to start or how to do this, but I feel like this is something that would be fullfilling for me and it's the path I'm meant to be on. So hopefully this journey can begin.

I'm also going to get together what I need to start a special needs support group here on the base. There are tons of special needs children here on base and I think a support group would be a great thing. I miss the support I had living in Va Beach and I would love to help the other families here find the support they need as well.

I know none of this is going to be easy, but I really feel a pull to do this and I hope it's something I can succeed in.

Feeling Defeated

I've spent the better part of the morning researching bipolar medications trying to find one that is relatively safe for the kiddo. Pretty much all of them can cause tardive dyskynesia, which automatically takes them off our list. We have an appointment tomorrow with the psychiatrist. I'm not holding my breath that we will find the right med for the kiddo. I'm praying once he's completely off the abilify that we don't have a return of violent mood swings and such. I'm praying we can actually take a go at this without medication until we see the nuerologist. I'm scared once we're completely off medications that he's going to become manic again forcing us into hospitalization once again and I'm not sure I can deal with that again. Mood disorders are such a horribly ugly thing and sometimes it takes all I have just to get through the day.

Can we be normal for a minute?

I wonder if our lives will ever be normal. I wonder if our lives will continue to be consumed with doctors appointments, medications, school and so on. So much has changed lately. We've moved to the depths of hell, errr Dahlgren, VA.. don't ask, it's nowhere. We have to drive an hour at least for any doctors appointments. The ONLY aba we found was in Pennsylvania.. 4 hours away! We have been through trial and error with meds. Now we are battling a new demon called tardive diskynesia. It's a horrible movement disorder that has me so scared that the kiddo is going to seriously hurt his neck one day because of it. He's constantly moving, constantly throwing his head back, flapping his hands, or just pacing back and forth. The only time he's perfectly still is when he's sleeping and then his sleep is filled with him talking in his sleep or waking up scared. Tardive Diskynesia was brought on by Abilify. I'm so angry at doctors for not being more careful with him. I'm so angry at them for not doing nuerological exams everytime we went in, so angry at them for brushing me off when I mentioned certain symptoms. I'm angry at them for never once telling me that this is a potential side effect.. a permanent side effect that he will be battling for the rest of his life most likely!

Moving was the worst thing we did. I love my friends here dearly, but PCSing in the middle of the school year is a nightmare. NEVER again will we do this because the kiddo has had the roughest go of things since moving here in October. He is not even going to school full time anymore, most of his learning takes place at home. I'm not even sure what our plan will be for next year yet, but I'm seriously considering full on homeschooling because I don't care much for the school. Maybe a change in administration will occur over the summer and then maybe my feelings will be different.. but for now, who knows.

I just wonder if things will ever be normal for us. I'm constantly worried and stressed out, so short tempered.. it's just no fun these days. I need a serious vacation, alone!!! I miss the beach and wish I could go back down there to visit my friends and just sit in the warm sand and stare out at the ocean for hours. I wish we could go a month without needing to go to a doctors appointment or worry about changing a medication or worry about what the hell these meds have done to the kiddo. I don't live my life dwelling on the past.. what's happened has happened.. but it sure would be nice to get a break.. even if for just a day or two...