My Story/My Other Son

Aiden was born in the fall of 2006.  It was morphing into winter really, with cold grey days and freezing nights, but technically it was still fall.  His pregnancy was highly desired; it took so long to conceive Louis, that I feared the same with Aiden, and began trying when Louis was only 14 months old.  But seconds of anything are rarely the same, and I became pregnant again within 5 months.  I was thrilled.  While the pregnancy was difficult, with my back going out and leaving me immobile in my third trimester, the delivery was a breeze.  Aiden came into this world much loved by everyone, and the first few weeks went by fairly typical of a mother with a two year old and a newborn, although my bad back returned with a vengeance.

Then at 6 weeks, life turned suddenly.  We were all sniffly, with me the worst, and soon Aiden caught a cold.  The cold then bloomed, and suddenly Aiden had a fever of 101.  Our pediatrician sent us to Children’s Hospital, where a diagnosis of meningitis was given, leaving us all agape with shock.  Aiden had just finished a 10 day course of anti-biotics for an ear infection that was suspected at 4 weeks of age, which itself was highly unusual.  This made a diagnosis of the type of meningitis Aiden had difficult:  after a course of anti-biotics, no bacteria would grow in a culture, even if it’s present in the body.  They deemed it viral in the end.  After 2 days Aiden dramatically improved, and they let us go home.

While we were tremendously relieved, it didn’t last.  Aiden began sleeping frequently, and when he wasn’t sleeping, he was screaming.  I was going back and forth to our pediatrician, for already scheduled follow-ups from the hospital.  My pediatrician deemed him okay, despite the combined sleeping/screaming profile we were presenting.  It was day 13 home from the Hospital.  By day 14 we were back, with the meningitis never having gone away and now back for a second show.  We spent the next 26 days in the hospital, where Aiden got tested for everything under the sun.  It was an odd profile; to seemingly improve, but then suddenly deteriorate.  Aiden got poked and prodded and given so many anti-viral & anti-bacterial medications, his gut would remain burned for the first 4 years of life.  All the tests came back negative, and by the grace of God, Aiden improved and returned to his old self; a smiley easy-going baby, except for the hours of 5-7 pm, where he would scream bloody murder.  I breathed a sigh of relief.  They had given us a horrible prognosis initially, although much of that had changed by the time we left, with the infectious team feeling good about Aiden’s outcome.

We went home and huddled close as a family.  Louis stayed in day care for the first month that Aiden was home, as we attempted to pick up where we left off.  The following month I started keeping Louis home a few days, to finally wet my feet with the whole newborn+toddler+home alone thing. I was looking forward to the experience.  Then Louis started trying to hurt Aiden, and life fell apart on a whole other level.

I was completely caught off guard; never had I thought such aggression could come from such a small being.  Louis, who was really just a baby himself, was unmerciful towards Aiden in his attempts to get him.  I became full blown reactive, yelling and shaming and giving Louis time-outs.  Paul was the same, but to a lesser degree.  Louis in turn, would lash out at us physically with all his might.  We were all miserable.  This lasted for months, until I was able to see things for what they were:  some serious transference was happening, with Louis as my mother and Aiden as me.  When I was a kid I felt like my mother was a fire breathing dragon who would annihilate me with one breath.  It was only then that I was able to calm a bit, at least some of the time, but Louis’s aggression towards Aiden continued.  I would make resolves to try to find patience, and then suddenly find myself enraged with Louis, for biting his brother and drawing blood.

This went on for years, and it was during this time that I almost had a nervous breakdown.  But slowly things changed.  I was seeing my therapist regularly, and on medication.  Louis began seeing a play therapist that we loved, and he eventually went on medication.  I began to meditate and pray, create art, do yoga, and start a women’s group.  It was during this time that I began my memoir, when Louis was 3 and Aiden was 1.  Life was a living hell, but as I have come to learn, out of suffering comes inspiration.  What started out as a, “Is this all?” essay, turned into one of the most important stories I’ve ever told:  mine.  My memoir gave me place to target my energy, have a creative outlet, and sort together the life I had lived up to when I conceived Louis, at age 33.  It saved me.

So here I am today.  Aiden is now 6, and in a Non-Severely Handicapped classroom for children who have normal cognition/thinking skills, but have other issues that might keep them from succeeding with the general education curriculum.  For Aiden it’s learning disabilities.  A whole mess of em.  Some of Aiden’s learning issues I completely understand, such as difficulties with speech/language, and sensory/motor skills.  With others I feel totally in the dark.  Last June, Paul and I took Aiden to see a neurologist for tic behaviors.  Aiden had been making vocal tics when eating, much like a grunt, for about 9 months before it morphed into something much more serious.  We had been through vocal tics with Louis a few times, and they always resolved.  But right at the 9 month mark, Aiden began jerking and moving his whole body, in addition to the grunting that was already present.  At first it was mild and infrequent, but by the end of a 2-week period, Aiden’s body was so involved, that I took him to our pediatrician quite suddenly one afternoon, after I saw his eyes glaze over.  It sometimes looked like he was having a seizure, although he could talk, eat and walk while it was happening.  I knew that this was not possible with seizures, but then what the hell was it?

Our pediatrician also assured me that what was happening was more on the Motor-Tic end of diagnosis, more than anything, and I was fortunate that he had a chance to see Aiden in full blown tic mode when I brought him.  My concern was that something weird was going on in his brain, like a sudden tumor, that was causing all these issues.  My pediatrician said no, but I sweated it out until we saw the neurologist 2 weeks later.  We had taken video of Aiden just in case his body was at ease, which in fact it was that day.  The neurologist examined Aiden, and then assured me that this was not a brain mass of any kind.  We talked some more, and Tourettes got thrown on the table, an uncontrollable tic disorder that is based in the brain. Paul and I knew this was a possibility, but it was still hard to hear.  “Wait and see,” she told us, and informed us that most people with Tourettes grow-up to be functioning, contributing individuals, with friends and families.  “It’s only the media that highlights the 5% that have it bad.”  Still, Aiden could get exhausted from all these movements.  “That’s when you might think about medication,” she told us. We all agreed to wait and see, and then we left.

Paul and I got a 2 month reprieve from the vocal tics, and a 3 month reprieve from the physical ones.  In August the vocal tics returned.  In September, the physical ones.  Since then they have increased in their frequency, and look quite different than they did last June.  Some days they are intense, and others less so.  Paul and I plan to return to the neurologist, where I am sure Tourettes will be re-visited.

Yet despite all this, Aiden is the most empathic individual that I know.  For all his learning disabilities and probable diagnosis of Tourettes, Aiden’s emotional intelligence is high.  He is a wonderful friend, who more than once has told me, “Mommy, I helped so-and-so feel better today.”  It breaks my heart to see him so angry these days, the fallout from getting his ass kicked a million times by Louis, although much has improved since the play therapy.  It also breaks my heart that such a socially intact kid is in a segregated class, where the mix of children range from those who have learning disabilities like Aiden, to those with social-behavioral issues, or high functioning Autism, although I feel like a giant snot for saying so.  Aiden has had almost no mainstreaming with the general education kindergarten (that is, Aiden going in to participate in their activities/lessons), although his teacher stated that after the New Year he will.  The regular kindergarten classes, impacted by budgets cuts and classroom size increases, were having their own issues with behavior.  Luckily for now, Aiden’s best friend is in the regular kindergarten next door, and they go to the same kick-ass aftercare until early evening.  He has a blast.

Still, I would like my kid to be around more typically developing peers during the school day.  But without going into too much detail, my school district is broke, and the alternatives are even less of a good fit.  So here is Aiden, in a contained classroom, likely through 1st grade.  It’s a K-1 class, with a small ratio of 17 kids to 3 adults.  Aiden is doing well academically, and gets all the therapy he needs.  Maybe after a couple of years of small group instruction, he’ll be able to handle a regular classroom, with a shared aide.  I would have to fight though, to get it.  Few real aides in these scenarios, but they do exist.

Getting back to Aiden and Louis, their relationship has been a bit better lately.  Now that Louis is 8, on meds, and in therapy, he’s a different kid.  Still wildly intense, and like an emotional rollercoaster to parent, but as a brother he has gotten better with time.  Despite the completely prolific aggression Louis once had, he utterly and wholly loves his little brother.  Even during his most aggressive years, Louis would periodically announce that he wanted to marry Aiden.  At least Louis is old enough now to know he can be intense, and to apologize, although endless apologies are part of the problem between them these days.

Then there’s me and Aiden, which brings me to the closing of this essay.  I have so much grief, on so many levels for this child, that it’s hard to know where to start.  And I want to preface everything I am about to say with this prologue:  I know on the deepest of levels that I must forgive myself.  And I do.  But still the feelings of failure are there.

Louis hurt Aiden, many, many times, from when he was a baby, until he was approximately 4 years old.  That’s a long time to have someone picking on you.  And no matter what I did, I couldn’t always be there and I could barely ever get it to stop.  I have already gone through a serious grieving process of how terrible I treated Louis during that time, which was essentially to punish him, even though he really was just a baby himself.  But that’s for another time (to learn more about Louis, archive My Story/My Son).  This is Aiden’s story.

Aiden, I know I failed you.  I let your brother hurt you, and I didn’t protect you.  I don’t think I will ever truly forgive myself, although I know I have to.  Love Mom.

Serious grief I have for this one, serious grief.  And now Aiden is pissed.  And letting us know, especially me, and sometimes the pup (Aiden, in response to the pup’s nibby feistiness, “He has to say he’s sorry!”)  It’s gotten a bit better since the play therapy, but we have a ways to go.  Not just Aiden, but all of us.  I grew up in a family that never stopped reacting to each other.  I refused a long time ago never to repeat any of my family’s serious dysfunction (trust me I am plenty neurotic in other ways), and it was with this intention that I have been able to make changes in my life.  As truly awful as it was, I would not trade those first 4 years of Aiden’s life for anything.  I have opened in ways I couldn’t have imagined.  Sometimes I see myself as a flower in bloom, something akin to an image caught on high speed video; sometimes I am an onion, with never ending layers I can peel away.  Both are true.

So I have to continue to be patient and loving with my younger son.  To try to and bring in humor when there’s anger, and softness where it feels hard.  It’s tough, let me tell you.  Aiden is a screamer and a thrower when mad, and so quick to fly of the handle these days, that I have to have a constant mantra running through my head in order to stay grounded: Be patient, he needs you; be patient, he needs you; be patient, he needs you.

Be patient, Diana, and things will change soon enough.  Have love, have patience.  Be a model, and the rest will follow.  And for Goddesses sake, stop yelling so much.

There, I wrote it.  I have been carrying the weight and pain of this story around for awhile.  Perhaps one day, if I am so lucky as to write a second memoir, I will be able to tell it in its entirety.  Until then I am gonna keep chuggin along…….

Until next time,

Diana Ray

11-18-12

3 thoughts on “My Story/My Other Son

  1. Hi Diana, harrowing would be one word that springs to mind, equally sobering would be another. You and your family are on what is clearly a demanding healing journey and so moved was I by that which you are demanding of yourself that I was inclined to suggest that I believe it would be a breakthrough for you and Paul to explore Tomatis therapy with the boys. Its a wonderful and painless therapy which I’ve seen work wonders for many families with special needs, therein; here is a link to kick start that process http://www.tomatis.com my hope is that this is the light switch that you’ve been working towards. For wisdom is healing and healing begets freedom and freedom is the process of unconditional love in all its magnificence, splendour and glory, sincere regards, Barry

    PS many thanks for your email, I seldom reply, but it was important to reply to you !

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