Monday, March 14, 2011

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.


**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.


  1. I am sorry you are struggling. I struggle too. Andre has been in K since Sept 1 and still cant always remember how to spell his name. the same name he had in Ukraine. he gets every problem wrong on his math tests. he cant count. he cant read. and yet the school says its just the language barrier. he will learn. meanwhile the 3 others are reading doing math and doing as well as the child who has been here 6 years(since he was 2) THEY are doing fine, why is THIS child struggling to learn ANYTHING when he is in a peer class two years younger than him? I too wish I could homeschool (again) but dont feel prepared for that with therapy appointments and trips to philly and surgeries on the horizon. so I feel your pain.

  2. Meredith,
    Are there any "special needs only" schools around you? I know they are fading fast, with inclusion being the preferred model. But we have found that the special school is much better prepared to deal with the behavioral issues confronting our children. Joey had a really difficult time in school for almost 3 years, and this year, he is really doing well.
    I feel your pain!

  3. I am sorry that there are so many challenges going on right now. Please know that you are in my thoughts and prayers from cyber world! (I first learned of "Monroe" from Adeye's blog last summer.) I homeschool my typical kids but not my T21 guy (since he is only 2). I have heard of resources for homeschooling kids w/DS, such as the River Bend DS group Keep us posted on your journey.

  4. Dear Mrs. ----,
    Thank you so much for the feedback you have given me on -----. I know your time is valuable and I wanted to let you know that we are aware of his current issues of hair pulling and taking off his shoes. I trust you to handle these issues at school. His father and I are continuing to work with him on appropriate behaviors at home. If he exhibits any new major behaviors or if you see a new emerging pattern, please let us know.
    We have been told by other parents that one way to help our child move past unhelpful behaviors is to find some small area where they are succeeding and to build on that. It would be so helpful to me if you could let me know what ---- does show an interest in at school. Also, if you find some game or idea that works at school, then we could also try it at home. And I will share our ideas from home with you.
    For example, one new tip someone gave us to use with ---- is the 10 second pause. Kids with Down syndrome often take much longer to process auditory information. So when we ask --- to do something (pick up a toy, come to dinner, etc.) we tell him very simply and then wait. Telling him again, repeating ourselves, or adding more words only adds to the auditory information he is trying to process. We have found that waiting quietly and expectantly will sometimes work.
    Thanks again for all you do for ----. Just yesterday he used two new signs with his grandmother and we told her he had learned them at school.
    ------ & -------

  5. Are your kiddos all in the same class together? My sons (well both of them SN or not!) have behavior issues specifically when they are TOGETHER. Wes's aide helps me get him to the car one day a week and she witnessed him hit his brother. In the face. I asked if that happens in school....she said nothing even CLOSE she even seemed shocked when it happened. I would wonder if part of that sibling "love" is what they are witnessing in school?? And you are very right, all kids are different regardless of abilities, and they ALL have the potential for naughty behavior. I think it's hard as a parent to get notes home like that, and hard to hear tone. Sometime I know I take it more personally/negatively than it was written when really the aide is being matter of fact. I know you are going to do the best you can for ALL of those kiddos of yours.


  6. I got a sheet from a friend to send to school with Meghan and then Kara. It was great because it asked questions, and said, "some things I did well today", so they had to write something positive. I will send it to you if you would like to have it. I used to get sad when I got so many negative notes too.

  7. I can't say I feel your pain, but I do feel compassion for you! In my mind, you are a Super Mom just for what you have taken on in love for these children. It sounds completely overwhelming to me, but you keep doing your best every day. I so admire that and, as a mom of just 3, work to be more like you in that way. There will be brighter days. God bless.

  8. Hi! I have read your post and I can say that you are a wonderful mom and I admire you. Whatever trials you are facing right now, I know you can surpass it. God bless.
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  9. When I get notes or emails from a teacher saying one of my boys has acted out in school or hasn't fit in to their idea of what is "normal" at any particular stage in their development I get that same feeling. Your children, be they special needs or not, are just the same as all the other children. They're in a classroom for 8 hours a day with someone telling them what to do, after a while any child would get frustrated and act out. And as for the shoe thing, I'm glad I'm not the only one with a child that does that. Oh and my 4 year old daughter's favorite past time is tossing matchbox cars at her brothers :)