Same and Different and school stuff...

Kids are kids.  Or so we like to say.  It seems to me the great marketing of "our kids are more alike than different" in regard to kids with Down syndrome and their peers has been out there for quite a while.  They really are.  But somehow, with some of the medical complexities and developmental delays, it gets lost in there.

I have a child who aspirates and has to have all liquids thickened, another who can't control the thin liquids, a third that needs his thickened because his g-tube leaks if it's not.  I have a child that had open heart surgery as an infant, one who had it as a 5 year old and another that at 8 will probably need heart surgery in the future.  I have a child that speaks in full sentences but in order to really understand her we have to ask her to break it down, a child that speaks one or two words here and there, two children that use sign language some and two more that are pretty much completely non-communicating as far as expressing their needs with language (outside of decoding their behaviors).  I have six kids who require glasses.  I have a child who takes his shoes off at random times, who chews on his socks, and who throws things.  A Lot.  I have a child who copies everything that the previous child does and therefore takes off his shoes and socks and throws things.  A Lot.

I have a child who is very capable of doing many things independently but likes the little bit of control that she has over her ability to do things on her own timing and it's seen as defiance.  I have another child who is very defiant because that seems to get attention and she's still figuring out that there are better ways to get positive attention.  I two children that appear to be defiant, but it's difficult to tell whether it is defiance or a lack of understanding on their part.  And another child who swings back and forth between being defiant and listening great... within 5 minutes.  I have a child that is defiant for one person and behaves great for another.  She knows what she can get away with and she does.

I have one child that was severely neglected and obviously physically abused.  I have a child that was sedated and very sick the first 18 months of life.  I have a child that received adequate care, but in general was neglected and just left to be.  I have two children born extremely premature who are both 'survivors' and had caregivers told that they wouldn't survive multiple times in their infancy.  I have a child who, by features and behavior, likely was subject to drugs and alcohol use during fetal development.  I have five children who never went home from the hospital with their parents.  I have two children that were brought up from infancy in loving environments, nurtured by loving caregivers.

My kids are ALL very DIFFERENT from one another.  But I can guarantee you that there are kids similar to each of mine that has no developmental issues, no medical issues, and when looking at them you'd say they're a typical toddler.

Lynae fits very clearly into some of those descriptions above, yet in those I was describing only my special needs children.  They are all 4 1/2 and older, yet Lynae, at 18 months, is very much the same developmental age as some of them-- and ahead of them in some areas as well.  If nothing else, she is more consistent in her skills, whereas my other children tend to have bigger gaps in their learning.

Out of all of my kids, I get varying responses from school.  The more I think about school, the more I wonder whether it is a waste of most of their time to be here.  The reports I receive back from the preschool include things like "he didn't participate with the class together.  She was defiant and told her teachers no all day.  He hit his brother in the face today.  He pulled his sister's hair today.  He didn't listen and cried during centers time.  He had difficulty listening to his teachers today.  He talked a lot in class today.  He didn't finish his work today.  He didn't finish his lunch today.  He seemed sluggish and tired today.  She wasn't cooperative today.  She didn't do what was asked of her.  She didn't want to work today..."  And on and on it goes.

EVERY day I get a note like this about at least 2 if not all 4 of my children that are in school right now that have special needs.  And, about once a week or so, one of those things is said about Kristopher.  Yes, I threw his right in to the middle of everyone else's.  Kids are very much alike!


I don't really know where I'm going with all of this, except to say that I'm frustrated.  Frustrated that I don't ever hear anything positive about my younger 3 in school.  Frustrated that every time a child acts tired or gets upset doing something it turns into a big deal.  Frustrated that I receive so many "sick" notices when a 99.7 "fever" at school turns out to be 98.6 as soon as we get home.  Frustrated that the reports are saying they have behaviors that I never see at home, so I can't help to fix them... and frustrated that the kids feel like they can get away with that at school and they'd even do it in the first place.  Frustrated that there's so much to deal with at school that I have no way of dealing with... because when I suggest that I come into the classroom to observe and help them to do whatever I can to get rid of the bad behaviors, that I'm turned down saying "no, it's ok, we'll take care of it."

Today, I'm just frustrated.

Today I also did 'formal' homeschooling for the morning.  I worked on colors with Aleksa for two 45 minute periods.  She did good on and off, but she would constantly smile and throw something or intentionally not do what was asked when she'd done it successfully just a few minutes prior.  She has the ability to match colors-- I think.  But she wouldn't consistently work with me so it's hard to know.  I would redirect her, pull her back in, and she at one point decided that if I put any pressure on her hand to help her pull pegs out of a foam board that she would break down in tears.  No worries, she wasn't hurting.  It wasn't anything that could be seen as a 'trigger' to past abuse.  It was defiance, and it was intentional.  She also asked to go to the restroom at least 6 times in the second 45 minute time period, which is her way of getting out of doing something.  I didn't let her-- she'd gone right before we sat down.  She 'forgot' she had to go and after the 45 minutes when I told her to go potty before we left to pick up the kids-- she didn't have to go!

Yes, it's frustrating to not have her listen, and to know that she could accomplish a lot more if she would put her mind to it and decide to cooperate.  But even more frustrating is the thought of putting her in school.  If she is doing these behaviors for me, who she knows she should listen to... what more behaviors are we going to see come back when we attempt to transfer that authority to someone new?  How will she deal with that?  I've see what she does when we're with a second authoritative person that wants to "first be her friend", and that is when she runs away, she intentionally doesn't cooperate, she walks the other way and does something completely different, she acts like she doesn't understand.  And then I step in and say something as simple as "Yes, do it" and all the sudden she does the skill perfectly.  I've seen it over and over again.

If I'm so frustrated by the reports from school and the behaviors that they are seeing at school, and the lack of anything positive coming home, then why am I fighting to get my kids in the same school next year rather than just withdrawing them and keeping them home for their schooling?

I don't know.

I'm at a loss.  I'm frustrated with school, yet I don't feel capable of home schooling and taking care of my family's large medical and physical needs.  So what's the answer?  I haven't a clue.

For now, I just let my "sick" kid eat the lunch which he didn't want at school but he's begging for now, and I get ready to take the other two pre-k kiddos to Busch Gardens tomorrow and for a visit with James' "Mama Ruth" and Aunt Megan and new baby girl... And I put today aside until Wednesday when life will strike again.

Did I mention that Emma bit the nose piece off of her brand new glasses today at school?  That's the fourth time this month.  Somehow, we're not seeing this behavior at home either.

*sigh*


**As a side note, I know teachers and parents and other 'school' folks read here, and I want to make sure to say that overall I am really pleased with how my kids are treated at school and in general what they're learning.  It's all the behavior stuff and all the assumptions that "because it's my kids it could be something serious" when it comes to childhood illness stuff that are so frustrating.  And I don't have a solution.  So I just don't know what to do right now.