Thursday, August 16, 2012

After the earthquake...

I've hesitated in writing this post. Hesitating in putting these words out there.  Should I throw them out within the internet, for all the see?  Perhaps those of you who used to read regularly wondered what has happened. To quote Queen Elizabeth II:"it turned out to be an Annus Horribilis"

 The year began in a very hard way when in January my uncle and Godfather took his own life in a very public way, leaving behind harsh words for the family.  We know those words came from a mind that was no longer his own but changed by the effects of alcohol abuse but they were hard to deal with none the less.  My grandmother's health failed, she fell, and had to be brought to the hospital, after which she was unable to go back home.
In the mean time, small but stressful compared to these larger matters, in our house everyone became ill with small complaints, and the house itself seemed to be conspiring against us with just about everything around us breaking.

May brought an unexpected hit, when my father died.  Our planned vacation in Belgium became a swift run to arrange the funeral. But not just the funeral it turned out. My father, an alcoholic, had managed to run himself financially in the ground, leaving me as his only daughter with debts to clear, and a squalid rented appartment to empty.   I will save you the descriptions of the stress, the bureaucracy and the dirtiness, as well as the pain of dealing with his grieving mother, and trying to hide the worst evidences of what he had become behaviour from her. It made it clinging to "honor thy father" and remembering the man he once was harder.
We dealt with everything we could in a month, but even now, regularly there are small things that need to be tended to or spoken about from a continent away. I fought hard not to let bitterness harden me.It brought back memories of a robbed childhood. But with God's help, I managed.

Once back home, the wreckage at home seemed to continue, with air conditioning upstairs and downstairs giving up, electricity failures, and trying to desperately catch back up with all the work that we were trying to do.  We had a small vacation in San Francisco, where I loaded up my energy batteries while my husband attended a conference.  It seemed we were climbing out of a valley of stress finally and the year was back on track.
Then there was a car accident.  Luckily we were not at fault, no one was hurt, the other person took responsibility and was insured. All in all, as car accidents went... it was okay.  Aside from the stress of not having our own car for a month, we were lucky in having a rental car in our insurance package and while it was an inconvenience after the the rest of the year, it didn't make a blip on the radar of this year.

We were looking forward to September, the rhythms of a new schoolyear.  Joseph starting in our Parish school.  My oldest boy, so smart that before he is five, he taught himself to read, and is eagerly learning mathematics, including the beginnings of division and multiplication.  And then Michael who was going to go to the same small Christian school that Joseph had attended for 3 years.  I could see a rhythm coming back, a cleaner house, a more relaxed mommy.  Lunchboxes.  Friends.  Hobbies.


And then came the earthquake that rocked our world.  After a few incidents it became all of a sudden abundantly clear that there was something wrong with my youngest son, Michael.  He changed almost before my eyes.  He would just.. go off by himself. Sought less contact with his brother.  Played differently.  And his language... was just not where it should be.  The most telling sign was that.. he did not react to his name.  At all.  The answer dawned upon us even before we hurried him off to the doctor.  Autism.
Michael is very smart, and the doctor saw reasons for concern and urged us to have him tested through the school district, but when pressed said.. if she had to put money on it.. she believed it was unlikely. In the weeks after the doctor visit though, and while we desperately tried to get through to SOME specialist, someone, who could evaluate and start helping our little boy... we saw the signs more and more clear.

The anxiety of a parent that knows something is wrong with their child and sees it slip more and more into the grip of the unknown is indescribable.  And now, 20 days or so after this all started with the sudden realization that Michael did not respond to our name, the agony, pain, anger and fear in my heart go above words still. I immediately implemented a strict diet.  First gluten free and casein free.  Afterwards going further and eliminating any starches, going on the specific carbohydrates diet, that is known to help some with autism.

I do not know if it will help Michael, but it's a healthy way of eating, it can not hurt, and it gives me something to do to try and help him while I call, and try and make appointments. We managed to get one over the phone intake conversation, which showed that Michael is severely behind in speech and social skills.  This will get him an evaluation which will lead to early intervention therapy.  But not to an official diagnosis. That is another path we need to walk, and we are still trying to even get a spot on a waiting list to see a developmental specialist.

I am scared.  And I am angry.  And in pain.  Before I even had children, I begged of God never to put this one challenge before me, never to let me have to deal with the agony and fear of a child that has a developmental, social or mental problem. Of course I wanted healthy children.  Everyone wants that. But if I had to be dealt a hand of a child that was not, let it please be a physical handicap.  I could see myself.. handling that.  There would be things I could predict. Things I could know.  A course I could predict.  The worry would be less.  Worry is now eating my every day.  Am I now 'the mom of the weird kid in the corner'?  What will he need from me to help him?  My love is not diminished by a grain, but my confidence is gone.  I know how to parent. I do not know how to parent a child with autism.

I hold myself up to hope.  Bill Gates and Steven Spielberg are on the Spectrum.  So is the 18 year old son of a friend of mine, who just last year graduated from highschool, is going to college and is planning to join the marines after that. But those people are not Michael.  Not my Michael.  Will he be able to learn? He seems smart.  Will he be able to have friends?  Will he learn how to show his love?  Will he have a more difficult life because of this?  Will our life be forever changed?  Is the fact that he is diagnosed this early helpful?  Or does it mean he is severely disabled and will he end up in an institution, sitting in front of a window and running the endless television or book scripts he repeats to me from his mouth?

 I have no answers.  Only questions.  And tears.  So many tears.  I try to be strong, because I know my husband worries, not just about Michael, but about me.  I try to force the matter out of my mind for a few hours a day, but like a bulldozer it runs through my brain. "autism" "autism" "autism".  It feels as if my life broke in two, before this problem surfaced, and after.  I do not dare to read too much, because the extremes scare me.  I read a story about a 19 year old who needs to be talked through his shower.  What will my life be in 17 years?  Will I have an adult child that is not self sufficient?  Will my life revolve around his care?  Or will he, with the necessary intervention, be able to lead a life in which all the love and talent that I see in him blooms open? &nbspI do not know.  I do not know how to walk this path.  But walk it I must.

4 comments:

Matushka Anna said...

Oh, Eva, where to begin...

I'm so sorry this year has been such a terribly difficult one. I had wondered what was going on with you but like a very negligent person I failed to reach out. Forgive me for that.

At this point I have not had a child with a non-physical handicap. I am not going to pretend to understand your pain and fear. When you said you had prayed that you would never have a child with a mental handicap, I did understand. I prayed that I would never have a child die, that I would take whatever handicaps came my way. And as you are dealing with Michael's emerging problems, I dealt (and am still dealing with) the death of two babies last year. I thought that the VERY THING I PRAYED FOR MOST NOT TO HAPPEN could never happen to me. I knew I could never live through it. But it did happen, and through God's grace I am still functioning. I don't know why such things happen. So many times I still cry out, "Why??" In the beginning the anguish was so terribly I thought it would tear me apart. People who had been through it assured me, most with tears, that it *would* get better, that I would survive. Again, I am not in your shoes and am not going to pretend to be. But it did help me so much to talk with mothers who had experienced the same thing I had. I have friends with autistic children. I am familiar with their pain and fear and grief. I just want to wrap my arms around you and then propel you toward them for support and help. However, all of our help comes from the Lord who made Heaven and earth...and who made Michael. He knew from before the world began that there would be a little boy named Michael and what cross he would bear. He loves Michael and he loves you. I do not have the capacity to understand why things happen the way they do, but I will be praying for you and your family.

Thank you for reaching out so others can pray for you and love you.

vicki said...

I have nothing better to offer than my prayers! Before I had children I taught preschool children with Autism.I was the one area I did NOT want to teach, yet that was what I got!....I fell in love with it! I learned a lot from working with the parents, how hard things can be but I also saw the love and the inexpressible joy as the children made progress! Holding you in my prayers and knowing God will be there with you every step of the way. trust in HIme, He will not let you fail! May you find respite in HIm after such a very difficult year!

tiffibug said...

My dear, dear friend. I am so sorry that you are having to deal with this. I have no wisdom or insight to offer. Just know that you are in my prayers and I am here for you if you ever need someone to talk with.

Mat. Emily said...

Dear Eva, I am so sorry. I have nothing helpful to say, just that you are all in our prayers. Please let me know if you need anything.