Filling In The Blanks

I hate filling out forms.  Not because it is tedious (but it is) and not because they are time consuming (because they are), not because I don’t think they are necessary (even though they are very repetitive for the exact same office), but because of the little place that asks about my employment.

I hate leaving that little spot blank.  I hate checking “not employed.”  It drives me batty.  I want to shout I once had a high-paying job with lots of power.  It’s not that I don’t think staying home with my children is a valid choice—and I did CHOOSE, happily, to do so.  It’s that by leaving that spot blank, I’m saying I do nothing for work.  But that’s not true.

All of us parents out there, getting a paycheck or not, know what work our children involve, especially those of us with special needs kids.  My developmentally typical kids are WORK, but my special needs little guy is MAJOR WORK.

Yes, I take him to therapy.  But I also work at home with all the homework they give us.  The therapists, who gets to fill in that little blank, sees my son for one hour a week.  I work reinforcing things at home for several hours a day.  Little by little, all day long.

I handle the meltdowns when his environment is too overwhelming.  I cook.  I clean, and my sensory seeker makes sure I clean 5x more than I would if he wasn’t a sensory seeker. I drive from appointment to appointment.  I coach my kids in etiquette, and help with extra circular activities.  I volunteer on over-drive at the school so I know I can get things for him that the school might otherwise not give him.  I do everything that people get paid for.   Like all parents.  But when I fill out that form, I feel dismissed.

I know it has more to do with financial responsibility, but I DO work.  I work for my children.  I fight for my son, day in and day out.  Searching for what works and taking off the table what doesn’t.  We’re trying to discover what all his issues are.  And I want to be recognized for that.  That I’m trying.  That I haven’t quit.  That I don’t dismiss my son.  And that those stupid, horrible, judgmental people in restaurants and grocery stores shouldn’t be giving me and my son looks of disdain!

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.

Books! Books! Everywhere there is books!

I am excited!!

I had posted earlier that our elementary school is an inclusionary school.  I’ve also posted on how much I volunteer.  Well, those two things collided today.  The librarian is getting a head start on next year’s book order; she’s making the wish list so when the funds come in, she can order.  Let’s just see how much funding she gets in this economy though!

Anyhow…  I was asked today, what books would *I* like to see on the shelves.  Me.  Little old me.  I get a say.  I get to pick some books that teachers and children will have access to.  Yeah!  Go me!

Of course, what do I pick?  I quickly said Sensitive Sam.  She went and hit one copy.  Done.  That was it.  Sensitive Sam will be on the book shelf at our school next year.  I told her I wanted The Autism Acceptance Book: Being a Friend to Someone With Autism.  Done.  Could it really be that easy?  How about Taking Autism to School and Squirmy Wormy?  Sure, why not?

Oh, how excited I was.  I’m picking books, she’s pulling them up on the publishers page and ordering them.  She isn’t even question it. 

But (and there always is a “but”, isn’t there?), then I asked for Hartley’s Steiner’s (oh, do I LOVE her blog!!) This is Gabriel Making Sense of School.  That was a no-go.  Was it the librarian?  NO!  The publishers don’t carry her book!  WHAT!?!?  But how could this be?  Our librarian did write it down and if it pops up, we’ll get it.  In the mean time, it’s not coming to our school.  Please, Hartley, get your book to those publishers!

But the other books…  They are on the way.  They will be here next fall.  On the shelves.  For kids to read.  For teachers to read to the students.  To help promote a better understanding for all.  And that excites me!

What excites me even more, was I was told to think of any other books I might want on the shelves.  Me.  Little old me.  I—I—get to pick some books.  About my child’s issues.  Things that might help.  Him, and other kids.  Go me!

What books would you add to the shelves—I can still add more.

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.