To Have or Have Not



The Boy fresh out the womb - 2006

This is one of my very favorite pictures - it's the first one of me and The Boy. Maybe it's the fact that I was coming off the drugs, but there's a look on my face that I've never seen in any other picture. Holding The Boy in my arms for the first time after feeling him grow inside over 39 weeks, was a defining moment.  I felt content, at peace, a feeling of love that I had never experienced.  Instant gratification to the umpteenth degree!   

On the day that The Boy was diagnosed,  the doctor asked if we were planning to have more children.  And while we weren't trying at the time, we knew we wanted more.  Until the doctor said, "You should consider genetic testing, if you want more children because you're more likely to have another child on the spectrum."  And it was two dreams shattering at once.

Everyone suggested we have another child.  My parents, family, friends, therapists - The Husband.  Everyone was asking when the 2nd one was coming.  Honestly, the thought of having another child with autism scared me - it still does. How will a second child impact The Boy?  What if I have a "typical" child who resents the responsibility of caring for The Boy?  I know parents do it every day with multiple children on the spectrum.  But could we do it? Not only emotionally or physically.  But financially. 

Then last year, at around this time, I decided I was ready. To take my chances.  Because I thought - what if, I was depriving The Boy of a potentially amazing sibling relationship.  I wanted another baby - autism or not.  I didn't care.  I knew in that moment, two and half years after The Boy's initial diagnosis that I had accepted autism.  The next month, we were pregnant.  And while I was nervous, I was so excited.  The baby's due date was to be on The Boy's birthday.  And I thought to myself - it's a sign.

But when I went in for my 16 week visit, my doctor couldn't hear the heartbeat.  And when we did a sonogram - we were able to see my baby whose heart had stopped.  My baby had died and I didn't even know. I'll spare you the details, but it's a loss I am still mourning.

There are days when I really want another baby. Especially when I see a pregnant woman or a newborn baby. And I am surrounded by pregnant women - at work, at Norrin's school, among our friends and family. I have days when our lives feel unbalanced and I can't help but think a baby would even us out.  Because I think The Boy would really be a great big brother. And then I have days that I'm content with The Boy because the thought of second loss would be devastating. And for a few minutes every month for the last six months, I am hopeful, only to be disappointed by the glaring pink line of negative pregnancy test. 

So while I absolutely love my first picture with The Boy, it makes me a little sad.  Because I wonder if I'll ever have a moment like that again.

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(originally posted on April 14, 2011)  

Autistic Today. Typical Tomorrow? (or Who will benefit from the proposed changes to the autism definition?

If you have a child somewhere, anywhere on the autism spectrum, you probably read this article by now.   If you haven't, here are what I deem as "the highlights": 

The definition [of autism] is now being reassessed by an expert panel appointed by the American Psychiatric Association, which is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders, the first major revision in 17 years. 

*

The changes would narrow the diagnosis so much that it could effectively end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal. “We would nip it in the bud.”

*

At least a million children and adults have a diagnosis of autism or a related disorder, like Asperger syndrome or “pervasive developmental disorder, not otherwise specified,” also known as P.D.D.-N.O.S. People with Asperger’s or P.D.D.-N.O.S. endure some of the same social struggles as those with autism but do not meet the definition for the full-blown version. The proposed change would consolidate all three diagnoses under one category, autism spectrum disorder, eliminating Asperger syndrome and P.D.D.-N.O.S. from the manual.

(I won't divulge my immediate reaction upon reading this article.  While in real life, I may have quite the potty mouth, I just don't write that way.) 
 
If the proposed changes are made, this will not impact The Boy.  He's autistic.  He'll fit the criteria today, tomorrow and quite possibly twenty years from now.  No ifs, ands or buts about it.

But it could impact many people I know.  And I know how critical services are to their families. 

What Do Services Have To Do With It?

I don't know how it works in other parts of the country/world?  But within New York City?  Diagnosis is EVERYTHING.  And even with a diagnosis, you still need to fight tooth and nail for appropriate services.  They're just not given out like candy.     

And if the criteria of diagnosis changes...so will the services.   Services like OT, PT and Speech.  And school placements in smaller classrooms or specialized school programs unfunded by the New York Department of Education.  

More importantly, how will that impact Special Education Laws?  What will become of appropriate school placement?

And when I think of my best friend's daughter who has a PDD-NOS diagnosis - a little girl who is at age level, cognitively but has speech delays and requires a smaller classroom setting. She's currently in a specialized preschool and receives OT and Speech.  If the criteria changes - will she no longer qualify for special education?  Will the DOE recommend she be placed in a typical classroom of 25 or more kids?  It's quite possible.  But it's not where she belongs.  And it's absolutely not where she will succeed.  (Not as of now anyway.)

For the last few years, I've heard about budget cuts to special education, special needs services and medicaid.  I've heard of agencies and schools shutting down and therapists moving on to other careers.  In areas like The Bronx, where services and therapists and finances are already extremely limited, what will families do to ensure their child gets the therapies they need?  Will their children have a chance?

And please don't me get started on insurance companies who will do absolutely anything not to pay for services...

As it is, The Boy has a diagnosis and my insurance still gives me the run around.  

Maybe I'm reading this article all wrong.  I mean, I'm not a doctor.  Nor am I business analyst.  I'm just a mom.  But to me, the only people who this may benefit from the diagnostic change criteria are government agencies.  

So MY Big Question is:

What exactly are they trying to nip in the bud?

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If you are opposed to the change - please sign this petition.
(petition started by the Mom behind The Aspie Side of Life)   

One Doesn't Have To Be The Loneliest Number

(a recent conversation with my parents)

Dad: "When are you going to give Norrin a brother or sister?  You're not getting any younger."  

Me: "It's not that easy..."

Mom: "Ay please, at her age - she might as well forget it." 

Before The Boy was born, I had never given thought to having children. 

Seconds after The Boy was born, I was immediately asked, "So...when are you having another one?" 

And on the day The Boy's was diagnosed, the doctor warned me that I was more likely to have another child with autism.  But friends, family and therapists insisted that The Boy really needed a sibling more than ever.  

If it were up to The Husband, we'd have an apartment full of babies.  The Husband is 1 of 7.  And all of his siblings have 3 or more kids.  And some of those kids have kids.  (Clearly, I am the weakest link in the fertility department.) 

And after my miscarriage, it's been difficult.  And with every month that passes, the more accepting I become.  I will probably never have another child. 

Most days, I try not to think about it.  But it's pretty tough when I read other special needs parent blogs and the focus is sibling relationships. 

I always wonder - what kind of big brother would The Boy be?  How would a 2nd child change the dynamic of our family?  Is The Boy missing out on something?  Am I? 

And these 'what if' moments make me reflect on my own sibling relationships.  I'm 1 of 3 and we're not close. And as for The Husband's relationship with his siblings...let's just say that the holidays came and went without any phone calls. 

Sibling relationships can go either way - I have friends who consider their siblings their very best friend.  But I also know siblings who have gone years without speaking.

When you have more than one kid, you just never know what their relationship will be like.  You can try your best to make them close but it's a gamble, like anything else.  

This is what I tell myself whenever I feel guilty about The Boy being an only child.

While The Husband and I may not have the ideal sibling relationships, we are lucky to have formed friendships to fulfill the sibling role.    

I would love nothing more than to have another baby, to give The Boy the opportunity to develop a relationship with a sibling.  But if that doesn't happen, that's okay too. 

The Boy will be fine as an only child.  He doesn't need to have a brother or sister to be close to someone.  And The Boy will not have to be alone if he does not want to be. 

Just as the The Husband and I learned to form friendships and adopt them as our "brothers" and "sisters," The Boy can do the same.  We can teach The Boy pick a good friend and to be a good friend.  Even if it's just to one other person.  That's all The Boy needs. 

    

The Queen of the What Ifs

"I always ask myself a million questions."

That's the first line of Norma Klein's book "The Queen of the What Ifs."  I read this book when I was in the 6th or 7th grade and for some reason, it has stayed with me.

And last night at around midnight - I thought of this book.  Well, not so much the book but the title.  Another night of insomnia and playing the "What If" game.  It's not fun.  Because if I'm going to be plagued with "what if" questions, I would prefer to be sitting on the steps of my summer home, barefoot, skinny and young enough to be wearing short shorts and just running my fingers through me hair watching the sun set.   

Instead, it's 2 am and I'm in my jammies, sitting on my sofa in my 2 bedroom apartment, with my lap top reading blog posts and updating my Facebook status because I have a million questions keeping me up.   

What if The Boy hates his new school?

What if the new teacher(s) can't manage The Boy's behavior?

What if they ask him to leave?

What if the 'typical' kids make fun of him?

What if he doesn't have the proper amount of support?

What if I'm pushing him too much?

What if he's not ready to navigate a community school?

and the biggest what if of all -

What if I'm making the wrong decision? 

I would have thought that a public school acceptance for The Boy would have provided me with a good night's sleep.  I haven't had one, in well...about a year.  I'm tired.  I guess I'll sleep by September or October.

What "What If" questions keep you up at night?