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.