Tragedies and Blessings

Something happened several times last year and now again this year that hit me so hard that I almost didn’t have words to express my grief.  Not one, but several Autistic children and young adults were killed, not by a crazed stranger, but by  their own parent.  One of them was not too far from us in another suburb of Chicago.  Others were in various places around the country, but each one of them had their life taken by the one person who should have protected them.  Reactions were strong on both sides.  Some people saw the parent as a victim; others viewed them as a monster.  I guess victims sometimes become monsters.

Certainly the government and society as a whole may have failed both parents and children.  The government has failed my own child when it blocks access to needed therapies.  Society fails him when they fail to believe in his capabilities or he is excluded from certain activities.  Government fails him when they fail to provide a free and appropriate public education or refuse to help keep him safe.  Society fails him when they don’t care.  Both society and government have failed parents as well.  Respite care and mental health services are often not available to parents when they need them.  Parents feel like they are fighting an uphill battle every day and become weary.

Sadly, some organizations have painted Autistic children (and adults) as a burden in their efforts to raise funds – a burden on their parents and a burden on society.  That view has been adopted by the people that look at us with pity and say that they could “never handle” having an Autistic child.  Yes, yes, I know that they are trying to be sympathetic to what they see as a difficult situation.  Their intentions are good and for that reason I truly do not judge them, but it makes me sad that they cannot understand the tremendous blessings that come with having P as my son.  At one time I would have said that I love P, but don’t love Autism because it makes his life hard, but I have come to realize that am just not sure who he would be without Autism.  Being Autistic is part of his identity and although I will help him to achieve his goals and have as many options as possible, he is not, we are not, victims of Autism.

In certain situations it is not an advantage, for example, that my husband was not born and raised in this country.  People can make unfair judgments based on his accent or based on the fact that he looks differently than they do.  Likewise, when I was overseas it was sometimes not an advantage to be from the USA because of some people’s thoughts about what “Americans” were like.  Still, it is not a tragedy that I am from this country.  It can make things hard in some situations, but it would be wrong for me to be ashamed of my country or for another to be ashamed of their own ethnic background.  In the same way, Autism should not be heartbreaking.

What is heartbreaking is the refusal of many to allow Autistics to communicate in their own way or to calm their anxiety in ways that seem “inappropriate,” like flapping arms or spinning or whatever is helpful to that individual.  What is tragic is when schools do not seek out new methods of teaching when the old ones are not appropriate for the learner.  What is sad is when people assume that not being able to communicate verbally equals no intelligent thought.  What is truly devastating is when a parent feels that their child’s life is so worthless that they would be better off dead.  The thought of it brings up the familiar sadness that I feel when I hear that it was probably a “good thing” that so-and-so had a miscarriage because the child would have most likely been disabled.  Again, I have no judgment here, truly, because I know the intent is to see the “positive” in a very difficult situation, but in my heart it hurts because it says that this person believes that the life of a disabled person is worth less than a person who is not disabled and I know that they just don’t know the truth – that the joy of loving a child with a disability is the same joy that every parent feels.  It is not, in any way, diminished by a diagnosis or atypical behaviors.

So then, why would a parent kill their own child?  Maybe it was frustration and exhaustion because they couldn’t make their child “normal”?  Why was that even the goal?  I really can’t understand it and it can never be excused or justified.  I know, I really do know, the frustrations of raising a child that is greatly affected by Autism.  My son is basically non-verbal.  He has never once answered back to a, “How are you?”.  He has gotten out of the house and just keeping him safe is a constant challenge.  We have been through periods of potty training issues and feces smearing and all of the challenges that go with Autism, but I can say with 100% sincerity that he is a joy.  His life is a blessing beyond what I could ever measure and I love seeing his beautiful face every single day.  His life is just as valuable as yours or mine.

Pablo on my lap at PC

P

I am a mess.

Yes, I admit it.  I am a mess.  A total disaster.  I have piles of laundry.  I can’t remember the last time I got a haircut.  My clothes are always stained and most of  my jeans are ripped at the knees.  My kids have sticky hands and faces and they all need haircuts too.  They all disobey and forget their chores and sometimes I even raise my voice.  I say things that I later think are too strict or too lenient or just too crazy.

I forget appointments and run late for church (and many other things) and I am always trying my best to keep my six year old and two year old from running off.  I see the looks of pity or sometimes contempt from moms with obedient, calm and clean children at their side and I want to explain that we have “issues,” but I am too busy keeping the kids out of traffic.

We don’t always finish our assignments.  We don’t always even start all our assignments. My almost three year old is not potty trained and she is the one that has no known neurological issues.  I often forget to thank the wonderful people in our lives and I forget to thank the Lord for my many blessings.  For all of this, and so much more, I have felt guilty.  And don’t forget about feeling guilty for wasting time feeling guilty.

Motherhood means lots of guilt for many of us and for those of us who have children with special needs, that guilt is compounded.  Was it the chocolate I ate when I was pregnant – or maybe the GMOs or the chemicals that I used cleaning the bathroom? In reality it may have been all of those things or none of those things.  Those things are unknowns, but there are other things that I do know.

I do know is that I love my family deeply.  I know that I love my God profoundly.  I know that I am learning to love them all better.  I trust the Lord more than I did before and I believe that He is FOR us and He is not surprised or bewildered by our problems.  I believe that He wants our ultimate good even more than I do.  I believe that I am my children’s mom for a reason and that all of these struggles have changed and refined me in good ways.  I also believe that there are many more mountains to climb, more pain to bear, more faith to build, but I have faith that our battles are not in vain.

I have come to realize that faith doesn’t have time for mommy guilt.  Faith moves forward, not back.  Faith learns from mistakes, repents of sin and takes a new path.  Faith is the “hupostasis” (the assurance, the “substance”, the guarantee, our “handle”) on those things that we cannot yet see with our eyes.  I build my life on the invisible things that I will one day see – the purpose in the difficulty, the building of my trust in God’s goodness, the “success” (in whatever way) of my children, the other things that I have not even imagined yet, but I believe are there. Those things motivate me and give me strength.

Yes, I am still a mess, but  I am a mess with a purpose and I can live with that.