Waiting

(written 10/28/13)

Need. To. Rant.

Waiting.  I'm tired of waiting.  If it was just for me, that'd be one thing, but this is my son, who has special needs who doesn't understand waiting, nor does he have the ability to wait.

Waiting.  Since he was an infant, I have been struggling with his tantrums, his oddities, his differences.  Now he's 8.  Eight years of waiting and trying to mold him into a good young man, a contributing member to society.

Waiting.  For almost four years now, we have been waiting for doctors and counselors to help us with him.  To head off major problems like suspensions, expulsions, injuring others, and self-injurious behavior.  Four years and all of those major things have happened anyway.

Waiting.  Tired of waiting for doctors and counselors to stop acting self-important and start helping my son, we started seeking evaluations and were put on months-long waiting lists.

Waiting.  Waiting for the school to recognize the problem that we had seen all along.  Day after day of destructive and violent behavior and time spent in the recovery room with the behavior interventionist or being sent home because they can't handle him, yet refusing to assess him for special education, even with a doctor's recommendation, and calling his behavior "average" when they are forced to assess him.

Waiting.  Waiting for evaluation reports to be sent and for assessment testing to be completed.  Waiting for the verdict of what they are going to do with him.

Waiting.  Answers to simple questions that no one wants to respond to.  Listening to people back-pedal and explain and skirt around the issue and refuse to acknowledge me.

Waiting.  The state's finding that the school was not in compliance with state law after a two-month investigation, which brought out lies and covering up.  Findings that will not likely help anything since what's done is done and there's not much they can make up for.

Waiting.  Two months before appointments were available with a new psychiatrist and a new therapist, who will hopefully be able to help more than the others did.

And meanwhile, in the midst of all of this by people who decided at some point in their life that they wanted to help children yet have lost the focus somewhere along the way, there's a little boy who is lost.  A little boy who doesn't understand why he is the way he is.  A little boy that feels unliked by his peers and different from the other kids, made abundantly clear by isolation inflicted by the school.  A little boy that is so anxious about making mistakes that he won't even try.  A little boy who is so frustrated with it all that he has asked numerous times to be checked into a hospital so someone can fix him.  A little boy who is so depressed that he often remarks that he wishes he was dead or that he wants to kill himself and a couple of times has been prevented from grabbing knives to do harm to himself.  A little boy that thinks he is all alone and no one else understands or has struggled like he does.  A little boy who has to try five times as hard as the next kid to pay attention and learn and comes home exhausted from the effort.  A little boy who learns differently and processes slower but is expected to keep up with the status quo.  A little boy who can't even enjoy birthday parties or theme parks or entertainment centers because it's too overwhelming for him.  A little boy with a hyperactivity problem that is expected to sit still all day and had his recess taken away long-term last year.

Bureaucracy and covering your own rear end.  That's what it's all about.  Not about this little boy that has been on crisis mode.  When did the school become this way?  And it's not just him.  I hear stories from other parents who have been fighting the same battle.  There exists a parent advocacy group just because this happens so often.  And even aside from special education, the stories I hear from my daughters about what goes on at school, the lack of teaching, the kids in crisis that no one seems to care about.  Little girls who are not little girls anymore, but exposed to sexuality and violence and drugs as young as the fourth grade.  Having to explain to your daughter what a vibrator is because her 9-10 year old classmate said she was using one and being afraid to allow what used to be an innocent slumber party because fifth grade classmates decided to experiment with homosexuality after their parents went to sleep.  Girls that are so confused that they are cutting themselves and contemplating suicide and experimenting sexually and getting pregnant as early as age 13.  In schools where rapes can occur during school hours.  Teachers yell at them to "shut the f*** up!" or laugh along with other students at special needs' kids and don't defend students against peer bullying, despite all the attention called to the bullying problem in this country.  I know there are good teachers out there (one example) and we have known some excellent ones, but they are outnumbered and fighting an uphill battle.  And in most cases, the problem is lack of parenting.  It just makes me sick.  I know we can't shut ourselves off to the world, even if it feels like we should.  But, how long, Lord?  How far will it go before you return?  I wonder if we are better or worse than it was in the days of Noah when God was sorry He made man and destroyed all but one righteous family.

We are waiting, Lord, for your return.  Anxiously.

A Broken-Hearted, Weary Mama

I'm staring at this blank screen with all these thoughts and feelings and yet I am thinking of a word that is seldom used to describe me...speechless.  I am usually capable of spilling my feelings via the written word much more aptly than by saying them out loud.  And yet, here I sit, not knowing where to start.

My son is on my mind.  He's been on my mind constantly for...well...I can't remember when he WASN'T on my mind.  I've written previous posts about him here and there and everywhere and even more.  We're right in the middle of evaluations at this point.  I quit his psychiatrist because he was condescending, offered no practical help, and the things he said didn't hold up when I researched them.  I had planned to stay with him until we had another recommendation, but when they tried to charge me $50 to write a prescription, I had had enough.  Our primary care doctor is a wonderful Christian man and is covering Billy's meds until we find a new psychiatrist.

We finished K.U. Med's testing and they concluded that he did not meet the criteria for autism (though in my heart, I really believe he does) and suggested he may have something called intermittent explosive disorder.  Again, people are only addressing the behavior, but if the behavior were the only problem, we'd have figured out something that would have worked over the course of the past several years.  WHY is he acting out?  There has to be a reason, a cause.  They recommended cognitive therapy, told us that blood work should have been done every year with the meds that he has been on (which we were never told), and advised us to monitor Billy's spacing out because it could be seizures.  We have been to two evaluation appointments at Children's Mercy Hospital and go back next week for a parent-only meeting to go over their results.  I am praying that this evaluation will yield more help and answers than K.U.'s did, but in case it doesn't, I've already been in contact with M.U. and we'll drive to Columbia for more testing if we have to.

In addition, I filed a complaint with the state about the school not complying with my request for an IEP and that is pending.  Since Billy's behavior has continued into the school year and I am not backing down, they are beginning evaluations for an IEP now.

I am thankful for meeting a couple of wonderful ladies who have autistic sons and have been encouraging me and giving me pointers and direction.  I also contacted MPACT, which is a parent advocacy group.  I have communicated with them via email and will be speaking to a representative on the phone tomorrow.  She has already given me great suggestions and gotten me spurred into action and organization.

I began compiling folder after folder of paperwork: Billy's daily school behavior sheets, his 504 plan, communication between me and the school, evaluations and diagnoses records, schoolwork that I did with him over the summer that showed his deficiencies academically, etc.  She also got me to request further records from the school.  My records are now about six inches thick.

In my research and compiling records, I was looking for behavior sheets we had filled out for Billy's former counselor to prove that this has been a long-term problem.  I couldn't locate those sheets--I am afraid they may have been lost when our basement flooded.  So, I had the idea to look through some old emails to friends and family to see if I could find any record of Billy's behaviors there.  What I found surprised me.

You see, I had deluded myself into thinking that around the age of two Billy had started acting out and by age four, he was totally out of control.  Apparently I was living in a fool's paradise.  In my memory, he had been a sweet baby.  I already knew I had a faulty memory, but I really missed the mark on that one.  I also recalled that he had been "slightly" behind his sisters developmentally, but that it was negligible and chalked up to being a boy.  As he was the third child and a difficult one and my job at the time sucked the life out of me, I didn't keep a baby book or a record of his milestones.  I found that he wasn't crawling at nine months (I didn't figure out when he actually did start crawling) and that he was barely stringing together simple phrases that were unintelligible at two and a half.  Following are some excerpts from these emails:

January 2006:

he is such an unhappy little baby and we don't know why.  he is so hard to get along with and really wears us thin.  he cries so much and about the only way to keep him happy is to carry him around all day long, which makes it hard to get anything done.  even then, that doesn't always work--he still fusses.

he has come upon his milestones a lot slower than his sisters, remaining my "baby" longer than they did. 

a few months ago, i had tried to do the "cry it out" things with him because he always had to be "put" to sleep.  you had to rock him, bounce him, feed him to sleep before you put him down.  and usually it was in the bassinet in our room or in our bed.  but, it didn't work.  he would scream for hours!  so i gave up for a while.  about a month or so ago, we tried it again.  at first he cried for a long time, but he finally gave up and fell asleep.  the next night, he cried a little less and the next night, a little less.  there are still some nights when he might cry for 45 minutes to an hour, but more often than not, he will only cry for a few minutes or not at all.  however, this only works at night.  during the day, he'll scream forever.  a couple of weeks  i was so frustrated that i was sitting in the floor crying.  i had had my fill of Billy and it didn't matter if i held him or not, he was still throwing fits.  i had reached my breaking point with him, so the safest thing to do was to put him in his crib and walk away.  at first i did it just so i could walk away and get a breather, but then i became determined to break him.  the more he screamed though, the more it frustrated me and i couldn't even bring myself to go in there.  i was sure that he would eventually wear himself out and go to sleep.  and he goes to bed on his own at night--what's the difference?  no, he screamed for 2 or 3 hours.

about the only way i get ANYTHING done is i have "stations" around the house.  i'll put him in his crib or in the floor in his room to play and i will stay in sight of him and clean in that room, folding laundry or whatever.  when he gets tired of that and gets frustrated, then we move on.  he has his exersaucer and playpen in the living room, a portable high chair in my office area, his full-size high chair in the kitchen, and my bed and his swing in my bedroom.  in all of these places, there is a stash of Billy's toys, so i don't have to carry toys with me around the house.  but everything is on his schedule.  when he's done, it doesn't matter if i am done cleaning the kitchen or writing an email or folding laundry, it's time to move on.  and sometimes he is just done playing and i have to rock him to sleep.  sometimes i can get a few minutes free by putting him in the playpen with his bottle.  i am hoping that once he gets crawling and walking, he will become independent.  

November 2006:

Billy will be 19 months old on the 15th.  he is a handful.  he is into everything, screams pretty much all day, he's a tough guy that likes to beat up on anybody and everybody (the girls, me, the cat...), yet still a mama's boy that won't allow me to leave the room without him or he descends into another screaming fit.  he tries my patience.

Billy is being a monster.  he is screaming incessantly most of the day.  he drives me absolutely insane.  he follows me around the house all day and if i don't do exactly what he wants or sometimes i think he doesn't even know what he wants, he lets out these blood-curdling screams.

April 2007:

Billy is not getting along with the twins and is bullying the baby too [his cousins that were staying with us at the time], so it is CONSTANT fighting and screaming, hitting, biting, scratching, pushing down the stairs, etc.

September 2007:

he enjoys having mama all to himself all day [with both sisters at school], but he is a pain because he wants all my attention and he follows me everywhere.  well, that's not entirely accurate--he wants me to carry him everywhere.  he apparently can't walk from one room to the next.  if i don't pick him up and carry him, he has a major meltdown.  he is talking more.  there are words that anyone can understand, but then there are words and phrases that only mama can translate.

October 2008:

Billy was acting out horribly!  Billy was downright demonic!  he was out of control.  he screamed and kicked and said he hated me.  he threw a can of pop at mom's wall, dumped perfume on her bed, knocked her earrings all over the floor, ran out in the street, etc.  i couldn't handle him.  and i was losing my temper big time.  i was stressed enough and i already felt like a burden to mom then i have this wretched child destroying her house, making it worse.  i couldn't control him.

November 2008:

Billy started calling me names.  i'd try to tell Billy to do something and he would ignore me and do his own thing.  he was acting up and when i would correct him, he'd throw a fit.  he's like a preschool terrorist.

I can't believe that I forgot all this and had this picture in my mind of a content, happy baby.  Reading these broke my heart, thinking that my son has been unhappy his entire life.  Both I and the school counselor have recently asked him what makes him happy and I am devastated to hear him say that he doesn't know or "nothing."  What is wrong and how do we fix it?

Last night, I was invited to come to our church's prayer group so they could pray for me.  I shared about Billy and was touched to listen to them call out our names at the throne of God.  One thing that really struck me was when someone said something to the extent of "God doesn't make mistakes."  Billy is not a mistake.  God made him who he is for a reason and a purpose.  In all these years of dealing with this, I have rarely let myself think of Billy's future.  For one, it's all we can do to manage here and now.  For two, I'm scared to think of Billy continuing with the same problems into adolescence and adulthood.  What kind of life will he have?  What kind of trouble will he get into?  What kind of harm could he inflict on himself or others?  I can't allow myself to go there.  But, thinking about God having a purpose for Billy made me realize that Billy does have a future.  Jeremiah 29:11 "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."  I'm not going to worry about his future, but I know that God has a plan for it.

The prayer team also took time to listen to one of my "theme songs" as of late: Lord, I Need You.  One phrase stuck out at me--a different one than what I usually hear loud and clear: "And where You are, Lord, I am free."  Billy is anything but free right now, but I know who can set him free.