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.

Therapy Decisions

The myriad of therapies my little guy needs is overwhelming.

Insurance won’t cover any of them.  The School district wouldn’t qualify him for any services.  Oh, they recognized he needed them (badly), but told me he missed qualifying by ½ point—that’s HALF a point—as a preschooler.  Then he didn’t qualify when he turned 5 because he was born on the cut-off date for school and chose to hold him one more year; something they encourage of children that have birthdays near the cut-off date.  To qualify, I’d have to send him to kindergarten, but they (and () didn’t want to because he wasn’t anywhere near ready.  So, if I chose to home him, they wouldn’t help him, and they were encouraging me to hold him because he was so far behind he would sink. 

My budget can only go so far.  What therapies do I choose?  Which are the most important?  Even if I can afford them all, there isn’t enough time to do them all as fully as I should to get the most from them. 

To a certain extent, the choice is made for me because there are not enough professionals out there; therapy slots have long wait lists that don’t see a lot of movement.  But for what is available, how do I choose?  Which ones make the biggest impact?  And do I flip around or do I stick it out to the end?

So far, I’ve gone mainly with speech therapy.  I figure if we couldn’t understand each other, we wouldn’t get much of anywhere.  Language is coming along beautifully, although he isn’t where a five year old should be.  I didn’t realize how much it had hurt that my sweet little boy didn’t say “mommy” until he finally did at 3 ½. 

I’ve also put time into social therapy.  I’m terrified he won’t have friends.  He wants them.  He wants to have and go to birthday parties and play dates.  H does have two perfectly typical older brothers, who are actually quite popular.  I’m not sure this one has helped him though. 

The schools OT works with him a little during a free slot she has, off-the-record, as a favor to me.  That all-important volunteering pays off a little.  But that time is limited and incomplete.

Right now, I’m more worried about the SPD.  Those issues can prevent him from being successful at school, both academically and socially.

What therapies do you do?  How did you decide what was best?  Is that working for you?

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.

Jump Aboard My Journey

Do you ever feel alone?  Like a piece of drift wood floating along in the ocean?  I frequently feel this way.

I’m asked about my support system from time to time.  I don’t have a support system.  Our closest family is over an hour away.  And quite, frankly, even if they were one street over, they wouldn’t be of any help.

My in-laws can’t acknowledge there is anything wrong.  To them, my son is just spirited—even naughty.  I’m over-reacting and wasting money and time on nothing.  All he needs is a good spanking and eventually he’ll fall into line.

My parents fall into the category of strictly believing in the stereotypes.  He can’t be autistic—those kids flap their arms, walk on tip-toe, don’t smile, don’t make eye contact, and seem to have unique talents (a la Rain Man).  Sensory issues?  All kids have quirks.  Please note my eyes rolling here.   They get angry that he isn’t potty-trained and don’t want him around...  He’s old enough to be reasoned with.  Seriously?  If I could reason with this child, my life would be immensely easier in many areas.

I have friends that try and understand, but they can’t really.  There are just things you don’t get when all your kids are typical, developmentally normal children.  They can’t empathize.  They don’t understand why I can’t participate is some functions.  We can’t trade babysitting (like we used to)—as they are at a loss on what to do with H. 

I do have a couple of friends with autistic children, but they don’t want to hear it.  Oh, they’ll politely listen, and help where they can, but their eyes are screaming at me to “SHUT UP!”  They would kill to have their children even half as high functioning as H.

No, my only support comes from the people I pay, and usually only for the amount of time I am paying them for.  And even then, I have to hear how it isn’t that bad.  And I know it’s not, but it isn’t they typical experience either.  What it is supposed to be. 

I suppose that is why I’m here.  I’m venting.  Hopefully to those who understand.  Hopefully to someone who cares.  To someone who relates.  To someone who will hop on this journey with me and occasionally lend a helping hand.  And, maybe, I’ll be a help to someone else.  There are many blogs out there, but most of them already have some idea of the wild train ride they are on.  Maybe being completely lost with someone else who is completely lost will be comforting.

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.

Sitting Still

My little guy never stops moving.  Truly, NEVER.  I don’t think sitting still is at all possible for him.  If—IF—his bottom is placed in one spot, a foot is moving, a hand is going.  He doesn’t stop.  At all.  Ever.

Except when he is sick. 

I’m ashamed to admit it, but when he first gets sick.  I feel almost grateful.  He isn’t moving.  Which means, I can actually stop and think and look and listen.  A very important thing to do once in a while when you have three other children, including a baby who just turned one. 

See, along with H’s never ending movement, comes a supreme intelligence.  And couple that with his lack of filters, and I’m in for trouble.  Everything must be locked up.  Literally with lock and key if at all possible.  Or, I might have eggs cracked open on the TV.  Or the salt dumped into the dog’s water dish.  Or all the cups taken out of the cabinet.  Or a beautiful new piece of artwork on my dining room wall.  All of this within the two minutes it takes to change a diaper.  He can overcome any childproofing every made.  At least any I’ve ever found—and I’ve scoured the Internet along with every baby store imaginable.  It doesn’t seem to matter what we try, nothing can deter him.  His therapists just look at me and tell me eventually, we’ll come up with something.  In the mean time…

So, when H first gets sick, I find the never ending cleaning can have a break.  Following him around can stop.  I can breathe.  I can actually feel comfortable letting the baby down (I was actually thrilled when he had his first birthday that we made it to his first birthday without any major issues).  Until, that is, I realize he isn’t moving. 

He’s laying there.  Still.  Unable to move.  Nothing matters in his world because “I sick.”  It scares me.  He needs to be moving and if something can stop him from moving, what am I to do?  His communication skills aren’t great.  He’s talking now, but he still doesn’t understand fully how to use language.  So, as H languishes about, I am overcome with panic—and need to move.  Yet, because he is still, I do not have much to do, but wait for him to move.  For a faint little whisper of “Mommy”.  Which hurts me and delights me.  I am never “mommy” but only “mom” and he never needs or wants me, except when he is sick and isn’t moving. 

So, there is silence in the house.  And stillness.  And the occasional neediness.  All things I ache for every day, but when they are here, I’m scared.  I don’t know what to do for my guy.  Is it horrible or just a regular case of childhood illness?

I suppose I have no answers.  Just a caution—beware of what you wish for.

Getting To The Issue

What’s the old saying?  “Life is what happens to you when you are busy making plans.”  I can certainly relate to that.  Nothing in my life has happened the way I planned it.  I planned on living in Europe and/or doing extensive traveling for awhile, I never did that.  I definitely didn’t want to continue living in Texas, yet here I still am.  I have four children.  Three were conceived on birth control.  The other one (my second) only came along after two years of trying.  I never thought I’d be a stay-at-home mom, yet I am.   And, I certainly never planned on having a child with… “issues”. 

I say issues because it seems that getting a firm diagnosis seems to be next to impossible.  I couldn’t even get anyone to believe me that there was something not quite typical (I hate to say normal because he is normal—HIS normal) about him. 

I was told all sorts of things.  I was told it was because he was a boy.  Um, I have two other older boys.  I was told it was hearing.  Yeah, as I thought, his hearing tests came back perfect.  I could say the magic word in a different room, on a different level of the house, in a whisper, and he’d come running.  The word?  Cookie.  I was told it runs in families.  OK, but my other two didn’t do that.  No one would listen.  I practically had to stand on a chair at his three year well check and insist that I just be humored.  I never did call at the drop of a hat and 99.9% of the time, when I brought my kids in, they were sick with what I’d say I thought they had over the phone (strep, flu, virus, etc).  If I was saying something just wasn’t right, LISTEN!  And if I’m wrong, I’ll shut up and everyone will get paid. 

I wasn’t wrong.  Now, what is wrong, everyone disagrees with.  I do have an OT and our new pediatrician says he has SPD (Sensory Processing Disorder), which is now clear as day to me.  But, everyone says there is more to it than that.  It’s just the “more” no one can agree on.  So, I say my guy has issues.  It’s easier than saying possible Aspersers, or possible NOS-PDD, or possible ADHD or possible whatever. 

Now, here I am, coming up on kindergarten round-up, sweating my child with issues.  Without a diagnosis, they won’t make accommodations for him until the school says there is a need.  He can’t get through school without help.  He’ll be OK in the classroom (at least in kindergarten), but not so much during specials—PE, art, music, computers and library.  I also worry because he isn’t potty-trained yet.  That is one that is bringing me to tears daily.  I know it’s normal for my little guy, but life just doesn’t accommodate a five year old who isn’t potty-trained. 

Yes, issues.  My life revolves around issues.   The issues my son has and the issues his issues causes.  I try not to plan too much anymore, but I do plan on finding a root cause or help with the issues.  My son is sweet, and funny (look out Jimmy Kimmel!), and smart, and cute, and deserves everything every child without his extra issues gets.