Don’t Upset His Routine!

As most Mondays go, this one was not in the least unusual in the amount of weirdness that went on.  And for Matthew, that was not a good thing.  His grandparents have been gone for quite a few weeks.  So this was his first weekend with them since school let out.  So it all started with him coming home (Transition #1).

Rachel was gone with her dad and won’t be home until next weekend so that threw him off a little bit too.  I mean, come on, his room was actually clean! (Transition #2)

We also had our cat corner a stray dog in our back yard.  This poor pooch has been wandering around for days.  So we shut the gate to keep him in there until the pound can pick him up.  Don’t get too sad yet.  If the owners of this dog don’t claim him then we will take the dog that Austin has dubbed as Waldo.  (Transition #3)

I then took him to the woman’s home who watches him 3 days a week.  She is an Americorps volunteer who has worked with Matty in the past.  Well, he had already had such a nutty morning he didn’t want to get out of the van.  I had to all but pull him out of it!!  I finally got him out and got him to the door when I learned that his caregiver wasn’t home.  Matty was not happy to get back in the van and head back home! (Transition #4)

Luckily, about 5 minutes away his caregiver called.  She had thought she could beat us there and hadn’t.  So we turned around and went back.  Matthew was not happy!!  He was yelling at her.  He was yelling at me.  He was asking her where she was and telling me to go to work.  He had just had it!!

This boy has his routine and if you mess it up too much he is going to let you know about it .

1:1 Time With Rachel

Rachel thrives on my attention.  It’s kind of worrisome for me because I think it is a little more intense than just needing some mom or dad time.  She wants to be around us 24/7, with full attention, pin-pointed just on her.  Well, that is obviously impossible in our home and with life in general.

But the clouds parted and the sunshine was let in on Wednesday…to Rachel anyway .  I hadn’t mentioned yet but she has a new counselor.  I really like her.  She actually was the kindergarten teacher Rachel’s bio dad and I had picked out for her.  But she was offered a position at the high school as a counselor and she had to take it. Sad day.  But they are now reunited .

I hate the commute from my house to my office so if any of the kids have an appointment I just bring them into work with me.  So Rachel got to spend almost 7 hours hanging out in my office with me.  She got dressed up like a banker should.  She had me braid her hair.  She put on a pretty purple dress.  And for when she wanted to take a nap and not feel bankerish she put on glittery blue flip flops and soccer shorts under the dress   .   At work we have a supply type room with a desk in it.  I cleaned it up for her and set her up with my laptop.  She got to hang out and play games.  My coworkers were giving her little odd jobs to make her feel like she was working.  She was putting papers in the shred bin for my supervisor and making new account folders for me.   And she did take a nap after lunch.

Then we went to her appointment.  They are working on what her worries are and how to work through them.  She was getting so obsessive over calling me when she felt a hint of anxiety, that we had to take her tracfone away.  So we decided to tackle that first.

After her appointment I took her over to Sonic to hit happy hour.  Nothing like 2 slushes for $2.01!!  She had $5.00 burning a hole in her pocket so I ran her over to Target.  I learned she was wanting a glitter water ball.  She had been wanting it “for weeks and weeks and weeks!”  .  While I was there I splurged a little and bought a really cool puzzle.  It is really 8 Disney puzzles in one box.  There are 4-100 piece, 2-300 piece and 2-500 piece.

When we got home we attacked a 100 piece puzzle right away.  It was kind of hard!    I set up my laptop on the table and we found High School Musical 3 for instant play on Netflix!!  Netflix and wireless have been the best investments to get through the summer with the kiddos .  (For my facebook buddies I put a pic of her doing the puzzle and watching the movie on my wall yesterday) We did 2 of the 100-piece puzzles.  They were not simple at all!  Which makes it funner!!

I think all together we spent like 10 straight hours together.  We had a great time.

Handouts for Special Needs Parents, etc

Did you know that there is some awesome stuff to be found online to help people navigate the special needs waters!  Today I wanted to mention one of my favorite handout websites: Super Duper Publications .  And we all know I’m poor so of course these are FREE!

There are 215 different handouts.  Some go into some deep stuff like What is selective mutism? .  Others go into what we think are ”stupid questions” and are too afraid to ask like What is a special education teacher? .

If you get some time go check it out.  You may learn something.  You might find something to share with a provider.  Who knows what you can do with 215 free handouts!

FYI:  You will need to set up a username and password but I don’t get spam from them at all

Another Cyst

No, its not me this time.  This time it is Lauren.  We got the results of her ultrasound yesterday.  She has a small cyst on her left ovary.  She is a little freaked out.  It’s perfectly understandable after watching what her bio mom and I both went through.  And we ultimately had to have hysterectomies.  So I am sure she is worried that is going to be her fate.  To be 17 and having that looming over her head is probably really scary.  I know I would be freaked out. 

Her cyst is a pretty common thing.  Taking care of it will be an easy process as well.  She will be on the pill for the next six months to get her body in sync.  The doc thinks that that is what is causing her cyst.  Then at the end of December she will go back in for another ultrasound to see if it worked or not. 

In the mean time this girl is ‘tude city.  I never in my wildest dreams thought that the 14 year old attitude would creep back into our lives until Rachel got there.  But no!  Our 17 year old is a mess.  I don’t know if it is all the “adult” changes going on with school, college, friends, health, etc.  But whatever it is needs to stop or else she is sleeping in the backyard in a tent for a while

Not Again

One of the things I hate the most about being a fragile x carrier is my depression.  I HATE it!!  Even with meds things sneak in and I can’t do anything about it.  One of those issues is feeling tied down.  I don’t do well feeling confined but most of the time I can adjust. 

I never wanted a cell phone because I felt like people could keep tabs on me.  I adjusted to having one after my car accident.  With Kevin being the son of a cop he didn’t really appreciate having a Sheriff calling him and telling him I had been in an accident and was okay.  He knew Sheriff’s had to lie until the party arrived on scene.  And I was okay…he just didn’t believe it.  So he had me get a cell phone so if I was ever in another accident I could call him and tell him I was fine…not the Sheriff.  There are times I want to throw it out the van window but I refrain and move on.

I think part of the reason I had so many engagements was that same trapped feeling.  I was engaged 5 times from the time I was 16 until I was 27.  Every other year (not literally) I had a new fiancé! Marriage scared the shit out of me.  There is no going back on that.  And divorce is never an option for me.  I will never forget how pissed I was when Rachel’s great-grandma told me it was okay to marry her grandson because if it didn’t work out I could just divorce him.  Yeah.  Ya know.  Marriage just doesn’t work like that with me.

And, I don’t know, maybe I never let myself be legally adopted because I didn’t want that kind of commitment.  After years of child abuse I already knew that I couldn’t trust those in authority.  With no legal family ties, if I was to get hurt, I could cut that person out without feeling much guilt.  We all know I could never do that and that if I did I would feel guilty as hell.  But it is nice to think I have that option.

What is odd in all this is that I don’t feel trapped by the kids and or by fragile x syndrome.  I feel free when I’m with my kids.  But I’m getting off on another subject entirely.

Very, very slowly that trapped feeling has been eeking back into my life.  It finally peaked last night.  I was driving to get the girls from my parent’s house and I just wanted to flee.  I wanted to flee the job that I hate so damn much.  I wanted to flee the house I loathe with every fiber in my soul.  I wanted to run as far away as I could from the little town that I’ve spent 2/3 of my life in. 

When I got the girls, their presence soothed me.  Their carefree giggles and fun-nature brought me back out from the depths.  And even though I hate, despise, and loathe those things, I would be lost without the people in them. So thankfully today I don’t want to take my last $60 and run as far as it would take me.  Which really isn’t all that far these days

Enjoying the 80′s

I know.  I know.  I vanished again.   We are having unseasonably cool weather.  Usually by now it is so hot that we have the swamp cooler on full speed and everyone is laying around in their tanks and shorts.  For some reason, and I like whatever this reason is, it has stayed in the mid- to high-80′s.  I’ve been trying to enjoy it as much as I can before it hits those 90′s and 100′s we usually see.

Also, Kevin was supposed to do a blog post on Matty’s dentist appointment, and well, you see what happened with that.

I hope wherever you are the weather is as fantastic as it is here and you are having a spectacular Father’s Day.  This is the first time that I haven’t woken up on Father’s Day with tears because of how Matty’s “dad” cast him to the side without any hesitation.  (And then tried to sue me for the child support he paid in over the years).  He has Kevin and Kevin has him.  Kevin is the  most amazing kids to all 4 of the kids.  I couldn’t have been blessed with a better man to be my husband and father to our kiddos.

Fired!!

I had to make one of the most heartbreaking decisions yesterday.  I fired our pediatrician.  I still get teary thinking of it.  He is an amazing doctor.  It was the office staff that caused me to fire him.  I believe in a 3 strikes you’re out rule.  I hit the 3rd strike yesterday.

The first big negative thing that happened was when I finally get health insurance for Rachel.  For some reason the insurance company is saying that there is insurance but the office wouldn’t accept it.  It’s been a 3 year struggle over $300 to pull an eraser out of her ear!!  $300 for that!  Insane!

The second thing is that this doctor is in very high demand.  He is absolutely amazing.  So he is slammed.  I tried to schedule their well child checks.  We do them together every summer.  Well, they couldn’t get them in until the middle of September.  September!!  3 months.  That does not work when Matthew needs a shot before he starts school and school starts in the middle of August!

And the 3rd strike…the most heartbreaking…they wouldn’t allow Rachel and Matty to go into the room together because Matty is over 13.  I explained to her that Matt was mentally handicapped.  We always put them in together.  He watches what the doctor does with Rachel so he knows that it is no big deal.  Then he has his turn and it goes very smoothly.  The receptionist would not budge.  She said it was a policy that was passed last year.  Children over 13 have to go in alone. 

I made the September appointments and then I sat and stewed.  The more I thought about it the more pissed off I got.  I conferred with Kevin.  He totally sided with me on it.  I knew then that I wasn’t being overemotional.  I know I can do that at times.  I called our family physician to see about transferring them over.  I was able to get them in on July 7.  And this receptionist actually ASKED ME if I wanted them to go in together!  Score!

Therefore, I’m making the transition to the family doctor earlier than I anticipated.  I do plan on writing a letter to our pediatrician saying good-bye and explaining why we switched over early.  It still makes me sad.  I have a huge history with this man.  He was the one who found the fragile x in our family.  He has been there through it all with the kids.  But it obviously is time for us to move on to different pastures. 

(And our family doctor and the pediatrican grew up together so I know they will happily swap information to help with my kiddos )