I don't get it..

I have 2 daughters, each with special issues.  I lost a daughter to complications due to her special issue.  Then my son, who we thought was only behind in speech.  Until last summer.  They had done another evaluation of his speech and put things down about him in other areas as well.  Just a description.  But at the meeting I had questions that I was wondering if he was on the autism spectrum. 

So they told me they had some people coming out to observe some other kids in the preschool and so I had him looked at as well.

The 'experts' basically told me they are never on the fence about kids.  They either are or aren't.  But with my son, they're on the fence.  Certain things he does would put him in it, other things he does would kick him out.

And to be honest, I don't know how much of it is learned from my husband (whom I believe is on the spectrum himself) versus what is just him.  So I had them wait to come back an re-evaluate in the fall.  Figuring he'd be at school more.  I made an effort initially to be at church more so he'd be around more kids.

Well they came back out and are still not sure.  They wouldn't be completely sure until they tested.

We have to be getting ready to transition him from preschool to kindergarten.  I'd like to know yes he is or isn't before then.  Because it will make all the difference on how he moves through school.

So last night I tried to bring up the subject.  And of course hubby had a complete fit.  I didn't even get out talking about testing him to find out for sure.  So here comes another battle, where I will on my own, take time off work to get him tested.  Because I want to know for sure.

I'm sure I'll be extremely stressed about it.  But no matter how stressed hubby makes me on these issues, I will ALWAYS do what's best for my kids.

But I just don't get how he can not want what's best for the kids.. that truly amazes me that he doesn't look at it like that.

Crazy energy or just cranky?

I don't know what was going on with my kids last night.. or the night before.. <sigh> 

It's hard enough trying to find out from the one that can talk what's wrong, but from the two that aren't completely verbal.. that gets to be interesting.  The other night the youngest wasn't happy, but I couldn't get her to tell me why (she's delayed to missing part of her brain).  I kind of figured it was partly due to being tired and partly from being hungry.  Last night the boy asked to ride home with me from dinner (we went out).  As we're going, he starts shouting about wanting to go with Daddy.  So I'm like OK and walk him over and then start to leave.  Apparently the moment he got into the van with Daddy, he started carrying on about wanting to ride with me.  So he gets him out and walks him over to me and then the moment he's with me he starts in about Daddy again. 

Needless to say, by then I had had it and put him in my car.  Once we got on the road, he was better.  I don't know if it's energy created by the lunar eclipse that has the kids in a tizzy or just plain crankiness, but please.. this Mom would LOVE for it all to go.

The idea I had about my daughter and doing a book, well that got put on hold.  What I did instead is bought a red cape and she can be Red Riding Hood.  With the days getting colder, I think that's a better idea.

Wish me luck for tonight that the kids will be feeling better and not whiny as we have church.  Here's to hoping :)

Drama of pre-pre teens

My eldest is 8 years old.  I love her to pieces, but she is all over the place.  She can be happy one minute.. sad the next.. then angry after that.

I came home last night and she hadn't done all her homework.  I was running late, so I had her come up to try and work on it.  I can't do this.. I can't do that.. crying crying crying... just what I wanted to do for my evening.

She's a very bright young girl, but she gets caught up in "drama".  If it doesn't come easy to her she doesn't want to apply herself.

The teacher has commented a few times that her handwriting is very bad.  So I've been making her write out her spelling words.  Figure it's helping in 2 areas. 

Last night's math homework, she knew how to do but didn't know how to explain it.  So I wrote a sentence down for her and then she went into melt down because she couldn't write that whole thing in the space she had.  It was too many words.  So I tried to put it in a very easy way to show it and she doesn't do that either.  She "writes" it.  Which is fine, she did it her way and in her own manner, but this was an over an hour trying to get that one thing done.  And we still had other homework to do.  Of course this all comes up at "bedtime".  So there goes my going to bed early.  But we did get it all done.

I try very desperately to work on her confidence in a realistic manner.  I try to minimize the crying and carrying on she does.  I asked my Mom if I was ever like that and she told me no.  She apparently gets it from my Mom.

All I can do is pray when she becomes a teen it doesn't get that much worse.  But I have a feeling it'll be worse before better...

Ughh.. Fashion Designers..

I just found out last night that the school is no longer allowing leggings.  This frustrates me to no end.  I have a beautiful daughter, who due to her scoliosis does not fit "conventional" clothes.  So all I can buy her is leggings.  I'm just very thankful I didn't procure as many as I have in the past (luckily she hasn't grown in the past year).  But that's really the only pants she wears.

I tried jeans once.  Very few fit her right and the one that did, she couldn't fasten by herself.  Her one hand she is missing a tendon in her thumb, so it doesn't work like most.  Now I know there are kids that only have one hand and seem to manage, but they don't usually have the other issue that she has, which is her curve and not growing "normally".

She's only 8, but is only 4 ft, has approximately a 102 degree curve to her back and because of that wears 14/16 girls clothes.  I often have to hem things to fit her legs... but luckily she's grown just enough I don't anymore.  But who knows now?

I wish I could find someone that could make electric waists for jeans.  I mean come on.. they make them for women and for babies, why not for kids?  It would help many of us parents that have kids that would make this easy.

Or could the schools just say, don't dress "sexy"?  Nothing too tight.  That makes more sense.

I'm also worried about the parents that can't afford brand new clothes.  What if their child had leggings and now they're saying they can't have them?   Not everyone is rich.

Sorry for the vent.. but I had to get this off my chest.

Surviving

This week is vacation week.  More for the rest of the family rather than me.  But I'm surviving, barely. 

I love my children dearly and wouldn't want to be with out them.  However, that doesn't mean that I don't like a little free time.  Why is it that free time never seems to be enough or goes way too fast?  It does with me when I have projects to do.  When I don't, I do miss them.  It's a catch-22.

I also know that they will grow up way too fast.  So even though I'm trying to do a bunch of things -- finish writing my book, finish my oracle cards, work on my website to try and bring in some extra money, sometimes I put it to the side so I can play cards with my eldest, color with my youngest and blow bubbles with my boy. 

This week of "vacation" has been hard on me.  Some days have been better than others.  I have a herniated and bulging disc in my lower back and it runs down my leg.  So between that and lack of sleep, I have been not been in vacation mood.  But luckily last night I got decent sleep.  Interrupted only once.  I could have still slept but I had to get up and get the kids and me moving.

I will however, be glad to get home, if for nothing else, having my bed again.  I bought it last year when back was starting with the back issues.  But there's also pizza and green olives.  That's one thing that I'm really missing here is salt.  But soon to be rectified. 

Will not miss all the other stuff that comes with coming home -- unpacking, laundry, taking care of the mold issue.  But we'll take care of it as we need to -- its' what I we do in our life.  I'm very grateful for our lovely neighbors who help out.  Don't know where we'd be without them sometimes.

Another scary moment

My husband and twins have been fighting what I assumed was a cold for a week or so.  Well here we are on vacation and the cough sounds worse on both the hubby and the son.  I could not get him to sleep the other night and I found out not an hour later.  He started coughing so much that he couldn't catch his breath.  I jumped up and ran him into the bathroom.  My husband followed.  I'm running around getting medicine for him to help with the cough but he couldn't stop to take it.  So I threw on the shower as hot as it would go to steam up the room, then put on vapor rub.  Hubby was trying to get him to talk take his mind off the coughing.  Slowly but surely we got him stopped and medicine in him. 

The next morning, I had hubby run him back home to the doctor.  Turns out it's bronchitis.  So antibiotics here we come.  That of course is giving him a fever.  Poor guy so far is not having fun this vacation.

I still have things going on at home that need to be addressed.  So my neighbor is keeping me posted and I'm sure will help with whatever we need her for.  I'm so blessed on having her as a neighbor.

Then my eldest has found a friend and wants to do everything with her and her family.  I'm trying to let her do some things but not all.  She wanted to go swimming, but with hubby and son away, I had no one to watch the youngest.  So she had to deal with not going.  Instead I made her take a nap.  We were all tired from the previous night.

I can't wait until I go back to my bed .. this one I'm sleeping on, wakes me up when I'm moving.  But today will be a test, eldest is going swimming in the spring fed pool today with me.  Wish I had someone who could take a picture/video.  Because even though I've told her that the water is really really cold (it's actually warm for here at 72) I don't think she understands.

I'm also thrilled that my youngest is walking around with her walker.  The more she walks around the better she will be and working those legs.

Happy my kids are thriving despite being sick.. but I'd like a break myself :D

Vacation

or is it when you have small kids?  Let alone small kids with health issues ?  For me, it's not.  You're constantly having to watch them and make sure they don't hurt themselves and you have to take away your time to be with them. 

However, in saying that, for me that's a good thing (other than my back).  I work so much and have a long commute it feels like I never get to see them.  So this vacation coming up, I'm taking advantage of being able to hang with my kids.

It was a real wake up call to hear the stuff about my son in their testing and observations.   My eldest is vocal and my youngest is pretty good playing with herself.  My middle one I'm now looking back and seeing some of the stuff he does is for attention.  So my son may not realize it, he's going to get it this vacation.

However, I am taking a bit of a break in the mornings so I can finish up my projects.  I have to finish my youngest daughter's story and now start my sons.  But this is the time that I need to get this done.  I've been putting it off for awhile being very busy.  But that's part of what this and my other blog is about.  Help me get back into writing so I can finish the story.

I never knew growing up that I would have these types of kids.  The closest things we had was my cousin who had Cystic Fibrosis.  Most everyone else was healthy.  But I was in college and education major and when I was working, I was always drawn to those with disabilities.  I remember working in a video store and there was this boy in a wheelchair who had a talking board.  So he loved talking to me using his board.  Or should I say telling jokes.  His Mom thanked me for being so nice to her son.  She told me not everyone was and it broke her heart.  At that time, I could only empathize with her.  To me it was sad that people could be that way ..especially with kids.

Now here I am, much older and 3 special kids of my own.  I teach my eldest to be open about her condition.  I mean she has a scar.  We use the story of that she has a special heart and had to get it fixed.  I worry about her though.  She's so out going and so kind that I feel like she's going to be taken advantage of or just hurt because people don't take the time to get to know her.

I am very hopeful there will be some kids her age where we're going and that she'll have at least one that will get her and be her friend.  That's all I can wish for my kids.

Introduction

I'm a mom to special kids (or kidz - as I've spelled my blog).  I'm sure all people think their kids are special and there are even mom's to special needs kids beyond me, but this is just my story.

I'm actually writing a book about my three girls that have special needs.  My eldest has Pulmonary Atresia/Tetrology of Fallot (heart), cystic kidneys (kidney), and congential scoliosis (spine).  My second daughter had Trisomy 18 (Edward's Syndrome) and died due to the complications of it.  My youngest has a brain condition (not named as no one has exactly her condition) and had congential estrophia (lazy eyes).

I also have a son, but we thought he was alright, until he started talking.  So I've had him evaluated and he's still behind, not only with his speech but some other skills.  So, I now have four kids (three living) that are "special needs".

So I decided to blog a bit about what's going on with them, beyond my book.

Here's their picture together just last May:

It's an annual tradition we go out to my daughter's grave and take a picture with all the kids.  I've enjoyed seeing them all together every year and seeing how they all grow.  I will say sometimes as they've gotten older it's hard to get a picture where they're all looking at the camera and smiling.  This was one in about 8 shots :D

No matter what their conditions and what we've gone through and still going through - they are the light in my life.  Watching them battle and often times win their battles makes me very proud to be the one guiding them along.

I make sure they do as much as they can to the best of their ability.  I do not let them get away with "I can't".  Especially without trying.  If they try and they find they can't, then fine, they at least tried and we will try again a little later.  There may be things they never get done and that's OK.  Not everyone can do everything.

I'm hoping to give perspective to others that are in similar positions and make them realize they're not alone.  It's also a good thing for me to write about my experiences because it's a way to look back and see how far they've come as well as give me an outlet to be frustrated (if need be).  Because it's better to get that frustration out and not let it fester.

So thank you for "listening" to me and hopefully you'll like to be on this journey with me...