You Think You Know

I generally have no issues with anyone commenting that they are offended or put off by my blog posts, but I feel like I should put the disclaimer that I'm writing this particular post with a quite heavy heart and extremely raw emotions.  It is not my intent to offend or hurt anyone who may read this, but to help to educate and speak for those who feel like they don't have the words anymore.  I will use generalizations in the form of "we/us/they" but in no way believe that I am speaking for everyone who is related to this topic, but merely sharing the feelings of those who I have talked to most frequently.  That being said, and you being warned, let's begin.

In the last 3 days I have seen two different posts by two different moms.  One has lost an infant and one is in the middle of a scary process of numerous tests and surgeries to try to give her yet unborn daughter a chance at a "normal life".  In both posts, the mother was either accused of  something or her feelings were diminished by those around her.  In short, there was a huge lack of respect, in my opinion for each of these mothers.

Being a mom, at all, is HARD.  Many times, it is a thankless job.  Countless hours are spent from the time of conception with worrying over the child (biological or not) and their well being.  Add to that being the mother of either a special needs child or becoming the mother of a deceased child (at any age) and you have what could be one of the hardest jobs on the planet. Now you are not only responsible for the well being of living or neurotypical children, but also are responsible to be an educator for those who do not understand that just because your child "doesn't look disabled" or why you are so sad when "it wasn't even a baby yet" exactly what your life and the life of that child is like.

I'm going to try to give the perspective from both sides of this coin on both topics as best I can.  Please bear with me as I know words may do it a huge injustice.

The Special Needs Child
As I write this, my own little "puzzle piece" is sitting and watching the same episode of Handy Manny for probably the 30th time already this week.  We are quite blessed that most days, since he IS high functioning in his autism, that the days aren't too bad.  What people don't see are the really, really bad days.  You see, special needs moms get really good at hiding those bad days.  We cancel appointments and play dates.  We do what we can to redirect and distract our children from what might be upsetting them.  But there are days that we have no idea what's upsetting them.  We just fight through.  Kamden was originally thought to have hydrocephalus.  Thank God, the doctors were wrong about that, but he does still have what is considered to be an "abnormally normal brain".  He has a condition called lateral ventriculomegaly.  What this means for us at this point in time is that ever 3-5 years he has to have an MRI/CT scan of his brain to make sure that his cerebrospinal fluid levels are the same and if they have increased by much, we then face the decision of waiting to see if they level out or of having a shunt placed in his skull to drain the fluid properly.  Just over a year ago, he was diagnosed with autism.  In that year, we have been told by the school system that there's no way he's autistic, well meaning people have suggested that we "just don't discipline him enough", others have said that we "baby him".  Our "bad days" consist of things that while I hesitate to share them because many of even my closest friends have no idea, I am going to share them to give some perspective.  I know it pales in comparison to those who have kids with more profound disabilities, but our "bad days" consist of the following:

• yelling
• headbutting of people/walls/furniture
• biting
• screaming
• everything "hurting" (touch, sound, light)
• the textures of ALL foods make him gag
• everything is too loud
• compulsive turning on and off of lights, lining up of toys, opening and closing of doors

Even our "good days" aren't "normal" by the typical standard.  On good days:

• Conversations are almost entirely "scripting".  In autism, scripting involves picking out a scene from either tv/movies/conversations observed to apply them to current life.  This can mean recalling a feeling from the time that they remember the "script" or it can literally mean what the "script" has to say.  We do not have "normal" conversations that often and when we do, I cherish every word.
• Kamden is not potty trained.  We started trying to train him around the time he was 2.  He will be 6 next month.  Due to Sensory Processing Disorder (at least in part) he does not recognize the body signals and triggers that tell him to "go".  I can't even begin to guess how many diapers and training pants we have used in 6 years.
• Kamden does not process negative emotions.  It doesn't matter if they are his own emotions or someone else's.  If he sees someone angry or sad/upset, he IMMEDIATELY takes responsibility and is near inconsolable or spends quite literally the next week trying to soothe the person.  It doesn't matter if the mood has passed, he will continue to come up and comfort and apologize for your negative feelings.  
• This is pretty typical of all children, but we only watch certain shows and can only watch them at certain times.  Thanks to Obsessive Compulsive Disorder as well as just is typical with autism, routine is both our best friend and biggest hindrance.  Some things have to happen the same way every time, the same time of day, down to the letter.  If not...well....
• He does not verbalize his emotions well.  He can't tell you what hurts, what makes him sad or scared, what he's mad about or why he's hitting you.  He just knows he "feels wrong".  That's probably the hardest.  Not knowing what is wrong so that we know how to help.
• Brushing teeth, brushing or cutting hair and clipping finger nails are next to impossible and USUALLY require someone restraining Kamden.  

We are lucky with regard to Kamden.  He is QUITE high functioning.  I can't imagine what days are like for those who have a child with severe mental retardation, a physical deformity or handicap, or for those with autistic children who are entirely non-verbal.  I do know, however, that NONE of us would trade the children we have for ANYTHING.  We don't want you to feel sorry for us.  We don't want your pity.  What we need is understanding that there are times that we will have to cancel because little Johnny or Suzy is just having an "off" day and we can't make it better.  We need you to understand that some days we're just feeling the strain of it all and maybe had a run in with little Timmy's school over not having the assistance in place that he needs to succeed.  We need you to understand that it's not something we can "get away from", even if we have a mom's night out.  We're going to always have our child in the back of our minds, wondering if they are okay (even if only with dad!).  Every single day, in some capacity, we have to be the advocate for our child.  We have to explain to strangers (if we have the strength that day) why our child is completely flipping out in the WalMart checkout because of the beeping sound the scanner makes.  We have to sometimes endure the comments of strangers critiquing our parenting because our child is overstimulated and has thrown themselves into the floor and gone dead weight or is running around in circles, flapping their hands and yelling (I know my autism moms get this one).

The point I'm trying to make is parenting is hard.  Plain and simple.  While very few special needs parents would admit to it because they don't want you to feel like they want sympathy or are looking down on you, special needs parenting is infinitely harder.  If you haven't lived it, you can't judge the children, the parents or ANYONE who is directly involved in the care of the child  Every child is different and every day is different.  What worked before very likely may not work today.  What treatment helped before may spontaneously stop helping all together and leave the family at a square one.  Most of the therapies for special needs children are not covered by insurance, and while there is funding for SOME people, most families pay the therapies out of their own pockets.  It puts a strain on friendships, on marriages and even on parent/child relationships.  It's lonely and it sucks, but it's life and we live it.  We would love a day off sometimes, but we love our children as they are.  

The Deceased Child

Okay, I'm going to disclaimer this by saying that we are RIGHT in the middle of the 4 month time period of finding out Kaidi was not going to live.  3 years ago starting Febraury 28th, our lives changed in ways we'd never expected.  This will be more raw, but I want people to see it.  You need to know.  There are some wounds that time covers over but never heals.

I don't care if you peed on a stick and saw those double lines yesterday and you miscarried today or if your child died as an adult.  YOU LOST A CHILD.  Forget what science, pro-choice or anyone else says.  If to you it was a life, it was a life.  I have had friends since I lost Kaidi who have apologized for coming to me about early term miscarriages.  There are no small losses.  I HAVE to make sure you understand that.  I am not diminishing ANY loss.  What I need you to understand more, is that the loss of a child is unnatural.  We are raised believing that we died old and that parents die before their children.  So how do you EVER prepare for the moment your child's heart stops beating as you are giving her the only bath she'll ever have?  How do you prepare for the moment you go in and see on sonogram that the child you felt moving that morning is gone?  How do you prepare for the phone call that says there's been a terrible accident and they are sorry but they have done all that they can do? YOU DON'T.  There's no way to.  It sucks anytime ANYONE dies, but when your child dies, literally a piece of you dies.  

I do want to say that I understand COMPLETELY that it's hard as hell to know what to say to someone who has lost a child.  Sometimes well intended words cut like a knife.  I don't want to belittle ANY effort to comfort, but there are some things in particular I have to address and some I have to praise. (In this section I am using "I" to represent anyone, not necessarily that I have personally dealt with all of these scenarios.)

• Comparing the loss of my child to that of your parent/grandparent/friend is understandable ONLY in that both are losses.  Even if the person you lost was LIKE a child to you, unless they are actually your child, I have a very hard time hearing you say that you "know how I feel".  Even if you start it a little differently and instead say, "I have no way of knowing how you feel, but I know when I lost ______ I felt...." it makes me more likely to listen and accept your comfort.  Telling me you know how I feel immediately makes me shut off unless I know you have lost your own child.
• Do not ever, under any circumstances, compare the death of your pet to the death of my child.  I had this happen after I lost Kaidi, and I literally saw red.  I can't even remember who said it to me because I prayed to forget.  Just. Don't.  Pets are like family, but a pet is NOT your child. 
• Don't question why I do some of the things I do.  If  it has been 12 years and I still celebrate their birthday.  Let me.  It's part of my grief.  Some people don't mention major days after death and that's fine too.  We all deal differently.  Sometimes vastly.  Some may act like it never happened.  Some may grieve every single holiday/anniversary pertaining to that child.  Don't question. Just accept.
• Don't compare losing your child to "the system" as the same as losing them to death.  (Please don't stone me, but I've gotta get this out.)  The probability in the majority (though I KNOW not all) cases involving CPS/foster care/etc is that you or someone in your immediate home did/did not do something or were engaged in activity that was considered to endanger the child that you had to surrender.  The chances also are that you get to see your child and you get to know that he/she is okay.  In many cases, the chances are that you could even get them back.  I do not get that chance.  Ever.  I am sympathetic and do understand that losing your child in that capacity is horribly painful and life changing.  Just don't compare it to something like death.  Please.

On the opposite side, there are definitely things you can do that I appreciate, even if I don't verbalize it.

• DO talk about my child.  Ask about them (especially if they were older and you knew them) and if you are emotionally able to do so even participate in special memorial events we may have in their honor.
• DO be there.  Sometimes all we really need to hear is "I'm praying". Don't assume it's cliche.  It's what keeps us alive some days.  Don't discount ANY small thing you do.  One of the best things anyone has ever done for me personally is to say, "I"m not going to ask if you're okay.  I'm not stupid.  I know you're not okay.  I don't know what to say and I know I can't help, but I can cram your facebook wall and inbox with funny or inspirational things all day long."  I seriously wept when this friend said and did this for me, and she's done it a couple of times since Kaidi's death for anniversaries or other "bad days".  Sometimes, as hard as it is to believe, you literally just have to be there.
• DO listen to my child talk about their sibling.  Kamden had just turned 3 when Kaidi was born and died, and he still regularly talks about her.  He remembers being at the hospital with her, being in the funeral home, he remembers it all.  Whether you believe in the afterlife/heaven/angels or not, I have to share with you this: Kamden plays with her.  One thing about children with autism pretty across the board is that they are fact based.  There is little to no "imaginative play".  Kamden regularly tells me about singing or reading to Kaidi.  We've recently had to make a special "firewoman" seat for her near his firehouse and he talks to her.  She died 40 minutes after her first breath, but she's just as real to him today as she was one May 29, 2011.  Especially if the siblings are young, listen.  Ask them about their deceased sister or brother.  We don't know at what point they might not talk so freely about it.  Make their thoughts and opinions welcome when they start expressing them.
• DO realize that even though I may act okay, I think about my deceased child EVERY DAY.  I see a sunset or a butterfly and wonder what Kaidi would have thought.  Would she have been completely captivated by them or have been so active and busy that she'd never see it, like her brother?  What would she sound like?  Would she look more like her daddy or like me?  Would her hair still be that same shade of auburn or would she be a full redhead like most of her cousins?  Even more so I dread the future.  I won't see her graduate.  I won't see her go on her first date.  I won't see her married or be there to hold her hand when she has my grandchildren.  You see, I didn't just lose my child.  I lost HER children. I lost the man she would have loved and the things she would have done  In a sense, even though I don't focus on it or act like it, every single day I lose her again because it's a day that I don't get to have with her.  

My head has so much more that I could write, but my heart and my hands are spent.  If you made it through this entire post, I applaud and thank you.  I'd even ask you to share it if it at all made you stop and think or if it rang true in any way for you.  It's rare that I can get out fully how I feel and what I think, but...well....there it is.