What Research Says

Hmmm, describes Anna's situation.

http://www.ninds.nih.gov/news_and_events/news_articles/pressrelease_cerebral_palsy_09092013.htm

A Quiet Little Meow

We are 3 weeks into the school year AND we are all still alive.  Not only are we alive but we are actually doing well minus the driving to 2 different schools on opposite sides of the county twice daily to take and pick up the kids.  The schools are 26 minutes apart.  They both start at 8.  One ends at 3 and the other at 3:30.  I don't like it.  At all.  But I will keep on keeping on because it is the best for the kids who will some day decide which nursing home to put me in.  Hopefully they will look back and see my struggles and have mercy on me.  Carly is doing exceptionally well (with the re addition of her ADHD meds) and at mid 6 weeks has all As on her progress report.  This is a first.  I think one of her teachers looks down on the fact that I pulled her out to homeschool her last year but I think the fact that her grades are better than they have ever been says I must have done something right.  Yes, she is a bit behind in her multiplication facts BUT when I pulled her out in 3rd grade we had to go back and redo 2nd grade math because it was obvious she had gotten by but had not really learned.  So the fact we did almost 2 years work in less than a year makes me ok with the fact that she needs a little more time to memorize her facts.  I didn't send her with ADHD meds on the first day and she came home asking me to please restart them.  I think most kids resist the meds so the fact that she requested them spoke volumes.  I'm glad we went almost a year without them but I'm ok with her being back on them also as long as she clearly needs them.  Ideal?  No.  Reality?  Yes.  On to Anna.  She is still only having about 1 accident a day in panties.  It is awesome.  The accidents are usually in the evening when she gets tired except there was that one night when I forgot to put her in a Pull Up for bedtime.  Oops.  She is loving her school too.  I had a near breakdown thinking again maybe she wasn't in the right place.  It went something like this- I asked her teacher if she thought this was the appropriate placement for Anna.  She said if it were her kid she would put her in "regular" kindergarten.  So then I freak out thinking I've done the wrong thing, scarred her for life...  So I call and talk to the special Ed coop head lady who reminds me that special Ed teachers have difficulty discerning what is "normal/typical" because they are rarely around it.  Basically, yes, my kid may be the valedictorian of her PPCD class but that doesn't mean she is academically ready for the other Kindergarten class.  We are going to discuss this further at her next iEP meeting which will take place fairly soon.  I will hold off on details until after the meeting because honestly if I start typing then I start thinking then I start over thinking and then I want to drink a 12 pack of Straw Beer Ritas.  None of this is healthy.   In the midst of all of this my great grandmother died at 99 years of age.  I was sad for my grandmother that she lost her mother because there isn't really an age where it's ok to lose your parent but I felt happy for my great grandmother who finally got to go reap the rewards of a life spent teaching others.  She started teaching Sunday School at 11 years old and did so until 80 something years of age.  I bet her treasures in Heaven are amazing.  I took Anna and Carly to the visitation at the funeral home but not to the funeral itself.  Carly did well.  Anna wanted to know when that lady was going to wake up, why there were roses on that lady's box, and she also informed me that heaven is full of dead people.  The next day Carly asked how the funeral went.  I said it was nice.  Anna said,"Was that dead lady there?"  I'm glad I didn't take her but I'm glad she got a little exposure to death.  There is never a good age to do that but I think all In all it went well.  Kenneth is finally done with physical therapy and back on his regular shifts at work.  Thank God!  I love him so much but when he has been gone every third night for 11 years it is a hard adjustment to have him home every single night for 6 weeks.  My hats off to you ladies who have your husband home every night- I'm not cut out for that.  I need my time.  Yes, the kids are here but when they go to bed it's just me and I love it- like right now.  I think I posted what happened to him but just in case I forgot- he tripped over the cat getting out of the shower and dislocated his shoulder which was I guess pretty bad because it took 2 hospitals, 1 ambulance ride, and an unprecedented amount of narcotics before they could finally get it back in place.  I want to thank the lady who would let out a soft "meow" every time he walked into physical therapy.  She's my hero and doesn't even know it.  Well, I suppose I must get to bed.  Gabe is in the midst of an ear infection and sleeping like a newborn so I had better get an hour of zzz zzz while I can.  Night.

First Day Of School

Big Girl Panties (Mine not hers)

The supplies have been placed in her cubby.  The meds are packed up to take to the nurse.  The ARD meeting has happened.  The lunch is packed.  The outfit is laid out.  The hair is washed.  The forms are all filled out.  All of the tasks are done and all of the things are ready.  But then there is me.  I am not ready.  I know this has to happen but my heart is breaking anyway.  We met Anna's teacher on Thursday night along with the classroom aides.  They could not have been nicer people who seem genuinely kind and caring and have a heart for the kids in the class.  That maybe eased my mind a little but certainly not enough.  I'm just going to lay it out there and if you are offended by it then I apologize.  This is my blog and my feelings- I'm not always right but one thing I am is entitled to my own thoughts and feelings.  When I first met with the head of the special Ed co-op I was excited about the prospect of PPCD.  It sounded great.  The main purpose of the class is to immerse kids in language.  If for no other reason at least they will have the language to make their needs and wants known which can really cut down on undesirable behaviors.  I mean really, what could be better than my child really getting better with her language skills.  The plan was to let her spend some time in the regular kindergarten class for socialization but then to put her in the PPCD class for academics.  Again, great plan.  She would start with 30 minutes a day in the regular class and increase as she tolerates with the eventual goal by the end of the year being for her to tolerate the entire day in regular kindergarten with minimal extra support.  She would then repeat kindergarten again next year in the regular classroom.  But then we went to meet the teacher night and my heart broke.  Reality is a bitch and she slapped me in the face.  There we were in a room full of kids and I somehow felt my child did not belong there.  I felt like she was too high level for this class.  Most of the kids are non- verbal and although my Anna is not the easiest to understand she is certainly verbal.  Most of the kids had some physical deformity and my Anna did not.  I suddenly found myself feeling like the snob of the PPCD room because clearly my child did not belong there.  But then I sat and talked to the teacher and the more we talked the more I realized she belongs there just as much as any other child in the class.  She needs the close supervision and attention that she can only get there.  She needs to be able to be taken to the bathroom every 30 mins- 1 hour.  She needs the extra understanding that is required when dealing with kids who have disabilities.  I'm learning that even as I think I have accepted things and that I am so understanding in the special needs world that I too still have ideas and prejudices that I didn't realize existed.  In the end the only thing that really matters is that my child is in the best setting to learn and that she is content.  It's time I put my big girl panties on.

When All Of A Sudden

She just got up that morning and she had made up her mind.  She was going to do it.  I wasn't sure how it would go given the 5000 epic fails we have had in the past, but I knew I had to support her and we had to try.  We had tried every incentive program we could think of.  We hadn't ever punished.  We tried to bribe, too, because we are so not above that.  We bought the required clothing and it just sat in her drawer, unused, until she decided she was ready for it.  But that particular morning she woke up and she was ready for them. Panties.  Little pink and yellow La La Loopsy panties.  She put them on and she was determined to wear them all day long.  She has now been in panties 3 days and has had a grand total of 3 accidents.  2 pee, 1 poop.  Not too shabby.  I cannot believe this day has finally come.  She amazes me but more than that she teaches me patience.  She teaches me that she will get it in her own time.  And she finally did.  5 years, 8 months, and twenty days but who is counting?

She Grew Up

I sat there today, staring at her, talking to her, and simply wondering when it happened. When did she grow up? Overnight it seems. Or maybe over a summer, but either way it happened. This beautiful young lady (who tries to push me over the edge on a daily basis) is that same little girl that I gave birth to 9 years ago. 9 years. It seems like so long ago but also just like yesterday. I'm afraid to blink again. She will be driving and having a boyfriend and then leaving home. My baby.

 She read the menu and picked what she wanted and ordered her own food and drink.  She even said yes ma'am and no ma'am and please and thank you to the waitress.  Somedays I beat myself up thinking I have failed her and then we have a day like today and I know things are going to be ok.  We spent most of the day together, just the 2 of us, and we both needed it.  

Anna, she's no exception.  She's 5, soon to be 6.  She's starting public school and I would by lying if said I wasn't scared out of my mind.  Her ARD meeting to develop her IEP is this Friday.  I'm pretty sure I already know how things will end up.  She will be riding the bus to another campus for PPCD.  She will do a little kindergarten for the social time but then when they begin working on academics she will switch over to PPCD.  I would be lying if I said I'm ok with it.  I mean, I am ok with it in the respect that I think it is the appropriate placement for her.  But in the whole reality scheme of things I am totally not ok with it.  I swear I come so far with acceptance and then it's like I have to start all over.  I get mad because things didn't have to be this way but more mad about how we were treated after the fact.  I have thoughts that I hope every time that particular Dr sees a kid with developmental problems that he has to think of my kid and the coldness with which he said "shit happens."  I hope that he never again acts so flippantly about the quality of someone else's life.  For a long time I reconciled that things were ok with Anna and would be ok with her because her "noodle" was completely intact.  Don't misunderstand me- things are ok in the sense that we will make it and things could be so much worse.  But what I'm struggling with accepting is that while she is smart and witty her "noodle" is not totally intact and she will struggle from here on out because of that.  No, I cannot tell the future but I'm not an idiot.  When your kid is 5 1/2 and knows 2-3 letters and can only count to 4 it doesn't take a rocket scientist to see things are not exactly on track.  So that's where I struggle right now.  I allowed myself to live in the fake world where she would have a weird gait and strange speech but that would be all we were dealing with.  Now reality is setting in, again, and it hurts.  Instead of going to meet the teacher night full of joy I am sad that a short yellow bus will pull up to my house every morning and pick up my child to take her to a school that is not where she should go.  I am sad that I will have to go teach the teachers and aides how to bolus feed her and when to medicate her and what things to watch for.  I know they have done it all a million times...but not with my child.  I am not sad because I have Anna.  Make no mistake.  I am just sad that our reality is not what I had made myself believe it would be.  I will adjust and of course Anna will adjust.  She always does and then I'm left feeling like an idiot for ever being sad in the first place.  Again, this kid teaches me lessons every single day and I know this will be no different.  But for now, she is growing up too and I am scared.

The Skinny On Our Summer

I must update on the Great Wolf Lodge.  After sending them that message via their website I received a phone cal from them wanting to make things right on our return trip.  They did.  We had a much better time without any problems.  They gave Anna a tube with a bottom in it to use which made quite a difference for a bit but then she refused to use it.  They allowed her to use the slides she wanted to use and because there were more adults in our party this time we were able to take her to do other things too that we could not do before.  We had a blast and will definitely be going back.

Prior to going back we sent Carly off to her very first camp- it was a 5 day church camp and the longest she had ever been away from home.  She was very nervous but excited to spend a week with friends and without parents and siblings.

I knew we would miss her but I missed her far more then I expected.  Her time there at camp was priceless though as she made the decision to accept Christ while she was there.  I had seen an update on the church's Facebook site saying a child had made a decision but I had no idea that child was mine.  I was so humbled by all those who prayed for her while she was at camp.  I know she doesn't know it fully yet but this was a defining moment in her life, the defining moment in her life.  She can't wait to go back next year and I can't wait to send her.  I'm even considering going with our church.  Yep, I'm pretty sure I've lost my mind.  As usual, God knew what he was doing and I am so thankful all things worked out where she cold go.  The first night she was gone I was bathing the 2 little kids and heard Kenneth calling for me from our bathroom.  I assumed he had forgotten to get a new bar of soap or blade for his razor or something.  I waltzed in there to find him laying naked in the floor and saying "honey, I'm hurt bad."  As much as I hated to I had to tell him to lay there and hold on while I ran and got the 2 littles out of the bathtub.  I hurried them out and went back to him.  He was pale as a ghost and unable to really move.  Apparently he was getting out of the shower and tripped over the cat and then slipped on the tile and tried to break his fall and ended up dislocating his shoulder.  I considered calling 911 to come get him because he looked so bad but then I thought about his coworkers showing up and him being naked in the floor and I decided against it.  Somehow together we got him up and dried off and semi dressed.  My friend Julie came to watch the littles as we headed off to the ER.  As much as I HATED to use the little local ER I knew he would never make the ride to Denton.  So we went local and they tried multiple times and could not get the shoulder back in place.  He ended up transported by ambulance to Denton where he got more meds and they were able to put it back in place.  He is in this horrendous looking contraption for 6 weeks and hopefully it will heal.  If not he will be looking at surgery but we are believing it will heal perfectly.  He goes back to work Monday on light duty and I hope all goes well.  It has been about 3 weeks since it happened and he has already made great progress.  

This summer also brought Carly's 9th birthday.  How is she 9 already?  We spent the day at American Girl in Dallas and the girls had a great time.  She had wanted to go there for years and I felt like she was finally old enough to really enjoy it.  She did.  She is growing up so fast.  Part of me wants her to stay where she is and part of me can't wait to see the lady she grows up to be.  She tries my patience on a daily basis but she is an amazing kid and I am so lucky to have her.  Homeschooling went well last year but my job change has dictated that she needs to be back in public school.  She is excited.  I am still not sure what we are going to do with Anna.  She could go another year to The Little Lighthouse where she goes 2 1/2 days a week and gets very individualized lessons and therapy or she could go with Carly to public school.  I won't lie- having them in the same place on the same schedule would be so nice.  I get so tired of always being on the road.  But that is selfish.  I just keep praying and hoping the right answer will slap me in the face.  We go Tuesday to start working on a plan with the public school for her.  Knowing what they want to do may help make up my mind.  She will either end up with a paraprofessional who stays with her in a regular room, in a life skills class at another campus which they would provide transportation to, or at a PPCD class at yet another campus where transportation would also be provided.  I don't know what I want for her.  It's almost like I need to decide whether I want her to flourish more academically or socially.  The thought of loading her up on the short bus makes my heart want to break.  Reality is so mean sometimes and although most days I'm ok somedays it just breaks my heart.  So I will keep praying and trusting the right answer will appear.  

This little kid will be staying home a few more years and I'm thankful I don't have stressful decisions to make about him right now.  He's a mess but he keeps us laughing.  He has moved to his big boy bed this last week and I am so proud of how well he has done.

Somedays he seems so big and then I look at I'm in this bed and realize he's still such a tiny guy.  Medically Anna is doing about the same.  I don't even know if I had posted about it before but she had been having episodes of falling down all the time.  Her seizure meds were reduced hoping it was a side effect.  For whatever reason the reduction seemed to work for a a week or so but then we were right back where we started.  All summer it has been a big fall fest.  Our house is tile so you can imagine how that has gone.  You constantly hear splat then crying.  I had talked to our neurologist about it and he said he felt she was not overmedicated and that she just needed more physical therapy.  Then she had a pretty bad fall outside and lost 3 teeth.

The bottom one fell out on impact and the top 2 front ones were pushed back.  It nauseates me to look at it.  The dentist checked X-rays and luckily the roots were ok so they just pulled the top ones.  She may be toothless for awhile because they were not quite ready to come out.  But they will come back no I am thankful she is ok and that they were at least baby teeth.

Up inside her mouth was so bruised up.  Poor baby.  And her speech.  OMG her speech.  It was hard enough to understand her before.  Remove the front teeth and it is next to impossible.  I say " What did you say?" and she yells louder as if volume is the issue.  She is no less frustrated than the rest of us.  About 2-3 weeks ago we had her levels checked and her Tegretol level was low.  I already knew before the labs were done because her behavior was so different.  They raised her level and now the falling has stopped again.  Sigh.  I hate seizures.  I suppose we will have further talks about this with neurology.  Anna is also throwing fits about her nighttime feeds so we are switching to boluses hoping to avoid the nights.  She doesn't like being tied down to the pole and I don't blame her.  Her eating has picked up but so has her upward growth so we still aren't really making any progress.

I started a new job a few weeks ago.  I am now a hospice nurse.  I am loving it so far.  My home health job was just too busy and they kept demanding more and more of my time, time I did not have to give.  God placed this hospice opportunity before me and it was clearly exactly what I needed and had been looking for. 

 My sister and her kids came to visit this summer.  They have lived in Georgia for years and are about as southern as you get...until now.  They have had to make a move to Long Island for my brother in law to complete a plastic surgery fellowship.  It is a huge opportunity but one that has been hard for them as they are readjusting to life as they know it.  I was so glad to see them be ease I'm not sure we will ever be able to visit them there.  Financially it just probably isn't feasible.  These are all of our kids with our parents.

The kids got to play a day at Great Wolf and then another day just playing in the water at our house.  As long as they were together they didn't care where.  I hate that life has placed these cousins so far away from each other but I know miles cannot separate love.

As the summer comes to a close we will spend as much time as we can being lazy and hanging out in our swimsuits.

It has been a busy summer with lots of twists and turns but at the end of it I know one thing is for sure.

I am so thankful for the promise that is forever.

My Message To The Great Wolf Lodge

I have a special needs child who is 49" tall and weighs 38 lbs. She is 5 years old.   She wanted to ride on the slides that are at Whooping Hollow.  In the name of "safety" your staff would not allow her to go down the slides because she is too tall although adults much taller than her are allowed to go down the slides because it is "safer" for their children to go down with an adult.  If this rule exists for safety as your staff claims then you should really examine the rule because putting a child who does not weigh enough and cannot follow directions well enough to go on the other slides is not the safer option.  As a "family" waterpark and one who raves about their compliance with ADA standards I would think you would make some attempt at inclusion of children who would like to enjoy a waterside just like other typically developing children do.  We are scheduled to stay again at the end of July but I'm not so sure now.  The indoor waterpark was a nice thing because getting too hot increases my daughter's seizures, but I was sorely disappointed that we were inside yet she wasn't allowed to ride the 2 slides that she was capable of.  We were offered a free Magic Quest Wand or a free dinner as a way to make her trip "special" and to I suppose appease an upset mother.  I refused both.  I don't want free things.  I want my daughter to be able to enjoy the park she had looked forward to for a very long time.  Shame on you for your treatment of patrons with special needs!