The Great Marshmallow Meltdown

Today we experienced the Great Marshmallow Meltdown.  It all started with my oldest (10) shouting at me.  OK, that’s not where it began, but it’s where this story starts.  “I hate you!  You’re no fair!  Life is no fair!”

To Which I replied, “It’s OK that you hate me.  It’s not your obligation to love me, and I’m OK with that.  I love you, with all my heart, which is why it’s partially my job for you to hate me from time to time.”

“I don’t care.  I hate you!  I want a new mother.”   {{ And, yes, I am trying to find a font that can slightly represent the disdain in his voice}}

“Sorry.  You got stuck with me.”

“Life isn’t fair!  It’s just not fair!!”

“Yes, it’s fair.  What it isn’t, is equal.  Never confuse fair with equal.”

“Quit telling me that!”

Yes, that is my mantra:  “Life is fair.  Life isn’t equal.”  That is the thing with having a child(ren) who needs more, or less, from time to time.  When your kids aren’t on equal playing ground, you need to recognize that everything is different in every situation.  I truly believe that is regardless of having a special needs child or not.  It’s just when you have a special needs child it shows up more often. 

My children all have the same two parents.  They live in the same house.  They attend the same schools, if not at the same time.  But they don’t have the same things.  They don’t share a room.   My oldest has a small closet compared to the other three, but he has a beautiful view of the lake from his bedroom and a window in his closet.  My second has a bathroom all to himself.  They have different teachers because they have different learning styles.  And, due to their different needs, we parent each of them differently.  Yes, I am four moms rolled into one.

I parent each child, give privileges to each child, have restrictions on each child based on THAT child’s needs and abilities.  I think this is fair.  It’s not equal, but it is fair.  My oldest can go off with his friends without an adult.  He is responsible and a rule follower.  He is independent and smart and developmentally on track.  He participates way more in many different activities.  I can say with absolute certainty that #2 and #3 will not be able to do so at the same age. 

So, when my second, who can barely stand any foods (his super sensitive taste buds—SPD issues), got marshmallows for a snack and I told my oldest no, we had the Great Marshmallow Meltdown.  Yelling.  Screaming.  Door Slamming.  Downright horrible, unacceptable behavior.  Stuff that isn’t going to get him a-n-y-t-h-i-n-g!

Now, I did offer #1 a snack (healthy), but he was leaving for a birthday party where he would be consuming cake and ice cream and all sorts of other junk (sleepover), so I didn’t think it was something he needed.  And, those marshmallows were for a recipe I plan to try.  And he treated himself to ice cream at lunch and a child brought in cookies for her birthday.  Volunteering has its advantages of giving you knowledge.

I try to remain calm during these bouts of explosive hormones.  Who knew how hormonal a 10 year old tween could be?  He gets that early puberty thing from my husband, like most of their less than stellar traits.  He doesn’t read this.  J  Just in case your wondering…  If I stay calm and rational, I get my son’s goat.  OK, childish, but who isn’t from time to time? 

It leads me to think though, how do you explain that when you have a child whose needs are different, why they get “special treatment” from time to time?  Why it is fair.  My kids who don’t get the privileges my oldest get, feel slighted.  My oldest feels slighted because he thinks the others are getting something he doesn’t.  And they aren’t wrong.  But it is still fair, if not equal.

Ah, well, hopefully they’ll understand as adults.  When they have their own hormonal tween child screaming at them.  And, hopefully, they’ll love me by then.

Pull-ups in Kindergarten?

I love the Internet.  I feel if you know how to Google, you can do anything.  If you lack an idea, you can find one.  Inspiration is everywhere.  Help is always around the corner.

Then why on Earth am I unable to find the trick to potty-training my 5 ½ year old son!?!?

Seriously, don’t tell me it’s because he is a boy.  I have two older boys that were potty-trained at the age of TWO!!  OK, I can buy that it is possibly the SPD or Autism, but I know many people that have children with SPD and Autism that have their children potty-trained before kindergarten.

Yes, KINDERGARTEN.  I’m not talking preschool.  Kindergarten.  I need my child potty-trained before kindergarten.  Not because the school is insisting on it.  Amazingly, they keep telling me it will be fine.  They will handle it.  He’s not the first, he won’t be the last. 

I’m scared out of my mind socially for him.  Doesn’t he have enough challenges?  Isn’t relating to people difficult enough?  He does not need one more thing that will keep him from making friends.  Something to make him stand out, negatively.  Something to follow him through high school.  And, I know it will.

I can not have him be the kid sitting at the end of the lunch table all alone.  I can NOT let that happen.  I can’t.  He wants friends.  He needs friends.  And, I’m scared not being potty-trained will prevent that.  I’m afraid that even when he is potty-trained, the damage will already be done.

I want an answer.  A trick.  A treasure box doesn’t work.  Charts don’t work.  Limiting activities doesn’t work.  And I don’t want to hear he’ll do it when he’s ready.  I think he is ready.  I think he does know. 

He has peeing in the toilet down.  He’s dry at night.  He doesn’t have accidents at the park anymore.  I’ve caught him hiding under the train table when he is going poop.  And, TWICE, he has gone on the toilet.  I believe he can do it. 

I just need to know why he won’t do it.  I can help him overcome a fear.  If the toilet seat is too hard, I can get a soft one.  If he wants a small potty-chair instead of the big toilet, I’ll buy one. 

I need more ideas, more methods.  I own more potty-training books than everyone else on my block combined.  I’ve scoured the Internet looking for them.  Nothing I haven’t tried is there.  All I am finding are other people’s stories.  I find little comfort in those anymore, because most did get their child potty-trained by age four.  Before kindergarten. 

I can handle the time if I knew what the hold-up was.  I need to be working on a target.  Something concrete. 

I really think my one year old will be potty-trained before H.  My one year old lets me know when he is going.  He seems to understand.  Once he’s walking…  Once he’s talking…  I’m sure he will be potty-trained by age two, if not sooner.  I want H trained first—he’s 4 ½ years older! 

Twinges of Guilt

Every mother, even those with only neuro-typical kids, knows that each child develops at a different pace.  Just because two kids have the same mother and the same father and grow up in the same household does not mean they will have similar personalities.  This is undeniably true.  I’ve always thought that similar personalities in siblings are a freak of nature.  Maybe because I am one of four and none of us are alike.

Yet, I still find myself guilty when I celebrate the baby’s milestones.  I feel as though I am somehow being disloyal to H.  I do believe, thoroughly and truly, that he is perfect and wonderful as he is; I could not love him more.  But I do feel an extra bit of excitement to know that the baby is a neuro-typical child. 

I’m not sure I am cut out to be the mother of a special needs child.  I’m doing it, but I’m not sure I’m doing it well.  There are so many people out there who do it better.  There are actually people out there who choose to do it.  This was not something I signed up for, but had thrust upon me. 

I am always looking for signs that the baby might not be neuro-typical.  I know it is because I feel as though we missed a lot of early intervention with H because I didn’t know sooner.  Or, at least, I didn’t officially recognize it; deep down I knew something was off by the time he was six months old.  I just allowed myself to be told by everyone, including the pediatrician, that it was because he was a boy or late developer or a preemie.  I still feel behind the eight ball and I just don’t want to be there with two children.

I am just so happy that the baby says “mama” and doesn’t scream his head off in the bathtub or try to drown himself when I wash his hair.  I’m also thrilled that he isn’t so easy-going in some situations; something I now realize was H’s way of shutting down to deal with being overwhelmed.  Yet, if I celebrate these things and the normal milestones of first words and other communication, I just can’t help feeling like I am saying something is wrong with H.  That he isn’t perfect and whole.  He might not be the average kid, but he IS perfect and whole.

Either way I feel guilty.  I feel as though I’m slighting a child no matter how I handle it.  Maybe it’s because people will ask if I worry about the baby.  Or that our (new) pediatrician looks harder at the baby because of family history and usually tells me when I answer questions that I know what I’m looking for. 

Did I do wrong by H in the first place by allowing my concerns to be dismissed?  I just wanted to believe that was it.  And how horrible is that?  Is it because I won’t repeat the same mistakes?

I don’t know what it is, or why it is.  I just know that I have to figure out a way to celebrate both children as freely as I can.  I don’t have these pangs with my older two, but then again, they are long past hitting several milestones in a year and potty-training.  Oh, that potty-training…

Inclusionary

I love our elementary school.  I really do. 

Oh, I have my fears about my little guy starting kindergarten.  I am losing sleep over things.  But, I do know, deep down, it will be fine.

Our elementary school is an inclusionary school.  That means they take special needs kids who can be and should be mainstreamed.  There are lots of aids and resource classes for them.  Several of the teachers are trained in special education even if they are not special education teachers. 

OK, so there is not an overwhelming amount of inclusionary kids, but more than the typical school.  And the school is prepared to handle it.  And, more importantly, if my guy doesn’t qualify, but has a need, he can still get it (partially because I pray to the copy gods). 

My child will have teachers with the special education.  If he doesn’t qualify for an aide, he will be in a class with an aide who will still be there to help him.  The classroom lights will have light filters on them.  He will be given room to move.  Faculty and staff will not blink if he isn’t potty-trained.  He will be accepted at least by the adults.  These are half my fears. 

Yes, there is still more that can hiccup his education/time in school.  But some of it is handled.  The principal has asked me what I need for him, and she is helping to make that happen.  We’re working backwards.  The teacher he will have in kindergarten said she won’t worry about academics as much as she will social skills.  She is putting his actual needs first.  And the fact that he is extremely bright doesn’t hurt.

Yes, I will still need to get him into speech, but he will qualify for that with flying colors.  Or at least he should.  I am sure he will get what else he needs, even if not officially. 

Inclusionary schools are a beautiful thing.

My Square Peg

I know people who lock themselves and their children away in their homes rather than dealing with the complications that come with having a special needs child.  I have refused steadfastly to take that approach.   Partly because I am NOT a homebody.  Partly because I have other children without issues that need to live typical, full lives.  And partly because I figure that is the big, bad world my little guy must line in so he’d better get used to it.  My approach is: I will find a way for my square peg to fit into the round hole.

For the most part, I believe my approach has worked well.  It is not always the easiest for him, but he gets through it, and each time it is a little easier.  That is the point of all the therapy, isn’t it?

But sometimes I have to remember to back off and let him be who he is.

Recently, we went to the elementary science expo (pretty must a science fair where students work as a team to do various experiments as a school rather than individuals).  My older two children were both invited to participate—a pretty big deal.  Last year, my little guy did just fine.  This year, however, it was just too loud and too crowded.  It was a day that would be just too rough for him.  So, my husband took him out to the car to watch a movie while my older two participated.

It wasn’t ideal, but it was what he needed.  I’m not quite sure how to unlock the secrets of what makes it work some days (last year was louder and more crowded) and not on other days.  I’m not sure if there even is a secret.

We jut keep pushing through and hope for more successes than less-successful days.  I do know that if we don’t try, he will never find a way to be comfortable in the world he must live in.

At Least I Keep Up On Laundry

We’ve all been there.  The point where we are about to break.  When everything seems to be spiraling out of control.  Even before I had my challenging child, I had been pushed and prodded into that spot where life seems like a black hole.  And, deep down, we all know the moment will pass and we will all come out of it just fine. 

We all have our own ways of dealing with it—writing, grabbing a cup of coffee with friends, checking out the latest chick flick, dinner with hubby, chocolate.  Lately, I’ve found a little way of sitting back and reminding myself that “this too, shall pass.”  I put it in perspective.

·         It’s not that H still isn’t potty trained at 5 ½; he is making sure I don’t fall behind on laundry.

·         It’s not that H doesn’t understand language; he’s making sure we learn to choose our words carefully.

·         It’s not that H can’t stand still; he’s making sure I’m getting plenty of exercise.

·         It’s not that H can’t handle shopping trips; he’s forcing us to stick to our budget.

·         It’s not that H isn’t responding as well to therapy as we had hope; he’s teaching the therapists to work hard, reach further, and learn more.

A friend told me that I shouldn’t worry about it, that God doesn’t give us anything we can’t handle.  My thoughts were that God doesn’t know me very well then.  But that’s not true.  We are getting through this.  We might not know exactly what to do, or how to do it, but we are learning.  Every day is a learning experience.  For all of us.  H is a square peg learning how to fit in a round world, and the rest of us are learning how to help him. 

So, during my times of thinking that running away and joining the circus is a viable option, I put a positive spin on things.  Sometimes it really helps me see the light at the end of the tunnel.  Other times it just gives me a giggle.  Every time though, it reminds me that as hard as this is on me, it’s just as hard on him.  I do believe there is a reason for why he is the way he is and why he is in our lives.  He truly is a wonderful little boy with lots of great qualities—like his sense of humor, his drive, his ability to work hard, his intelligence, that gorgeous smile…

I Need A Recipe To Cook

I am not a cook.  Not a natural cook.  Not with the likes of Bobby Flay or Rachel Ray.  It’s not instinctual.  I need recipes.  Detailed recipes that give me good step by step directions.  When I have one of those, I can make something happen.  I make a mean Mint Oreo Cake.  Because I have a recipe.  I often joke, if you can Google, you can do anything short of perform surgery.

For kids though, I have no recipe.  There is no user guide, no manual, no blueprint what-so-ever.

Because of this, I worry about my little guy quite a bit.  Will he ever get potty-trained?  Will he have friends?  Will he do OK in school?  Is he ever going to master language?  Will he have a girlfriend?  There is more to worry about than I could even begin to imagine with my older two children.  So many special, other concerns.  Things I never realized I would be concerned with: Will he bite the buttons off his shirt and choke?  I mean, come on, he’s 5 ½. 

But, I also worry about how his issues affect my other children.  I can’t allow just any kid to come over and play.  I have to consider how they deal with H.  Some kids do it extremely well, others not so much.  There are a couple of kids I literally have to say aren’t allowed over if I don’t have something specific for H to do elsewhere.  We also can’t go anywhere at any time. 

I worry that this builds resentment towards H from my other children.  My kids have done a great job in accepting H for H.  He’s just their brother.  But they are getting older and he holds them back at times.  I can’t make a promise that we’ll go to the zoo/museum/movies/library/place de jour tomorrow, or this week, or even this month in case it is more than H can handle and I can’t handle H during the trip.  We always have to play a “we’ll see” waiting game.  It’s not fair to my other kids.

My second son is only 18 months older than H.  The two of them should be best of friends.  And they ARE friends (thankfully).  But C must always be paired with H to make sure H is doing fine when we do go places, i.e., the local inflatable play place or park.  C should have times where he is able to go off and just be with his friends, since there are differences in skills and maturity due to H’s issues.  C never complains (God love that kid!) and is happy to be with his brother, but I worry if I’m hurting him in some way.  Not all of C’s friends can really comprehend what is going on with H—they are only in first grade.

I never know how to explain it to my kids, about H.  I don’t understand myself.  Doctors don’t seem to understand.  No one does.  So, I worry.  I worry because I have no other plan of action.  I need plans. A recipe.

How do YOU handle the limitations of one child puts on your other children?

I Pray To The Copy Gods

I take advantage of my two neurotypical older children in a minor, but very important way.  It’s something I would do anyhow, but just probably not to the extent I do it, especially with a baby at home.  But for the sake of my third little guy, I work this.

Sound intriguing?  It’s not really.  I volunteer at the school.  But I do it a lot.  4-5 days per week a lot.  Not all day, every day.  Enough to have a presence though.

I like knowing what is going on with the kids socially and with the school happenings.  I like knowing all the kids.  It’s amazing, over 1000 students and I do know most of them.  I like the message my kids get— knowing I care, that I value an education, and they aren’t going to get away with anything.  I like getting to know other parents that I might not otherwise have any contact with through different volunteer opportunities.  I like knowing the teachers and staff (with H that is very important).  I like the fact that the teachers and staff know me, and I’m hoping that will give H certain advantages.  I know it does.

Technically, our school doesn’t allow teacher requests.  The school feels there are too many kids to handle all the requests and doesn’t want parents upset if their request isn’t met.  Yet, I do handpick my kids’ teachers.  Sort of.  I’ve allowed the chips to fall where they may with my oldest, but I’ve made it clear what he needs in a teacher and he has been placed very carefully.  I named a couple of teachers I thought my second would be successful with, and he was placed with one of those teachers.  But, my little man with issues will have a teacher chosen by me, every year.  Once he is enrolled (he’ll only be starting kindergarten next year), I will try to write that into our IEP, but even if it doesn’t happen, I know who his teacher will be won’t be a problem.

I am very open about what his issues are.  The school is into the “confidentiality” of the situation, but I keep telling everyone all that I can (when appropriate).  I’ve told the school, that the only way it will be win-win is to have open communication.  It’s not enough that H’s teachers know, but the specials teachers need to know too—the librarian (he *can’t* be quite), the computer teacher (leave those head phones out and he will put them in his mouth), the PE teachers, the art teacher, the music teacher, the other teachers that work recess and lunch.  We all have to be on the same page.  It is a matter of necessity for them to not hold against him what he can’t control.  I even need to have the other kids in his class understand so he won’t be an outcast.

I am not ashamed of him.  There is nothing shameful about his issues.  He was born different.  He thinks differently.  He processes differently.  He learns differently.  But he is not a bad child; there is nothing “wrong” with him.  If we all help him where we can, even if that is just offering him understanding, then the whole big picture will be better for him in the long run.  He will be more successful academically and socially.  He will survive school, and maybe, just maybe, thrive at school. 

Education.  It’s all about educating everyone.  So I volunteer in the library (where I’ve started donating books to help teachers educate themselves, help other students learn about his issues).  I help in the art department.  I help out with music.  I pray to the copy gods in the work room.   I am the room parent.    I go to the PTO meetings.  I volunteer at the PTO events.  And I HATE our PTO, but I do it—with a smile.  I leave no opportunity unturned.  I am a team player.  And the school knows it, and have jumped on my team: Team Help H.

Preschool Problems

I am at this horrible crossroads and I’m not quite sure how I got here. 

I had this wonderful, I mean W-O-N-D-E-R-F-U-L, preschool.  I sent my oldest two through this preschool and was so happy.  When it came time to send H, I was thrilled.  When problems really started to be noticed as “issues” and not normal childhood quirks, they were there.  They helped me find help.  They even started a special class for kids like H.  They didn’t care he wasn’t potty-trained.  My hand was held and I felt like I had someone on my side.  Ever more important because my husband, as wonderful of a dad as he was, still couldn’t admit that something just wasn’t typical about our little guy.  I could never say enough great things about this preschool.  The preschool who accepted my son for who he was and was willing to bend over backwards to help and meet his needs.

Until this year.

H is in two different classes.  A regular pre-K class (as his therapist recommends) and the special, developmental preschool class.  His regular pre-k teachers are an issue.

This year, even though I was assured it wasn’t a problem, potty training became an issue.  How do I know?  Because when H has an accident (and really, there aren’t many), he comes home smelling and uncleaned.  Dirty underwear thrown into his backpack.  It’s not good. 

Because he seems to not be clicking with the kids, and the teachers do not seem to be trying to help him.  We went to one birthday party and the kids ignored him.  Two even seemed to go out of their way to be not-nice to him.  Parents didn’t seem to care and I couldn’t wait to get out of there.  Now I’m torn about every birthday party invite that comes home.  Do we go because he is excited and it can be a good social opportunity, or do we not because of the potential problems that could arise.  My little boy is sweet and loving and wants friends; he doesn’t miss that he hardly has any.

I even think the teachers go out of their way to turn the kids against H.  When I was up there for the Christmas celebration, H was in line, following the directions.  A few of the kids got excited when they saw their parents and went running off to mom or dad.  H saw and thought he should to and did.  Every one of those kids, turned, and started tattling on H.  He wasn’t the only one.  He wasn’t the first; not by a long shot.  Yet it was tattling only on H.  The teachers brushed it off, but the underlying meaning wasn’t lost on me.

The teachers (did I mention that my older two children had these teachers with no problems?), never seem to have anything nice to say about my child.  After I had had it with their negativity, just a couple of weeks into school, I met with the director, and their negative comments stopped to me, but the looks, if ever so quickly, are still there.  The drawing of breath when I ask a direct question is still present.  I can tell they don’t like him, and judging from his not wanting to always go to school, I’m thinking he gets it to.  Not to mention, a few of the parents who are worthwhile, do let things slip about comments the teachers make about my child.

It is mostly a teacher issue, I know.  But it isn’t.  The director is aware of the situation and yet it continues.  Why employ teachers like that?  Teachers who are supposed to love all children, have a heart full of Christian acceptance (this is a church preschool), but don’t really.  These are teachers who only love perfect children.  Children who cause no problems.  Children aren’t perfect.  And worse, the director promised me last year during registration, that if there was an issue, we could always move H’s class, no problem.   Except when I asked, it was a problem.  The classes were all full.  Nothing could be done.  Funny.  I remember during H’s first year, I received a call from the director asking if I could move H to a different class so that another child could move into his class to help resolve a problem.  It didn’t bother me, so I moved H (same teacher, just a different class).  Why on earth couldn’t she do that for me?!!  For H.  Who she has known since he was born.  Now I can’t move him because the adjustment would be too difficult for my little guy.

I hate school days.  I consider pulling him out every week, multiple times a week.  But I don’t, because his therapist says it is probably still better for him to be there than not.  And if I pull him out of that class, I’d probably have to pull him out of the other class.  And things aren’t going as well there as I would like, it is a good class for him and he looks forward to that class.  And I need him as prepared for kindergarten next year as I can get.  And because I know that I need to learn to deal with crappy teachers like that because I won’t be able to control things as he goes further into school; although I won’t be paying a considerable amount of money for the pleasure.

So, here I now sit at the crossroads, trying to figure out if I send the baby there or not.  Because registration is already here, and it isn’t an easy school to get into.  And because I did once think they were the most wonderful preschool ever.  And I haven’t found another one.  And because I successfully sent two other children there, and I know the baby is a developmentally typical child.  Because they are nationally recognized.  But I hate them.  I hate them for not loving H.  For no longer accepting him.  For hurting me.  For betraying me.  I hate them.  Even if they are the best.