“Blood is blood”

This was my Grandpa Leo’s version of “Blood is thicker than water”.  He would say it every now and again, jokingly, when he would talk about his blended family.  Even though I was related to him by marriage (he was my mother’s step-father), he always treated us as if we were blood relatives”.

When Howie was diagnosed with PDD-NOS last year, I sent an e-mail to three of my cousins.  All three have children who are just a year younger than Howie, and we visit with them quite often.  I sent them this:

As you may know, last week we took Howie to a developmental/behavioral pediatrician for his evaluation, and today we had our follow up/diagnosis meeting.  Basically it’s what we’ve suspected all along – she diagnosed Howie with autism spectrum disorder calling it PDD/NOS.  Howie’s weaknesses show up in his social processing skills, mainly in terms of how he relates to others, his inability to read social cues, etc.  She said that with intense therapies and immediate intervention, we have a good chance of helping him incorporate coping strategies into his everyday life so they become part of his daily routine.
While hearing the diagnosis hasn’t been all that easy for Tim or me, it’s been validating for us in a way because we’ve always known there was something going on with Howie, and now we can get him (and us) the help we need.
I’m filling you all in on this for a number of reasons, obviously the primary one being that you’re his family and I know you love him and want to know how he’s doing.  I’m also letting you all know that because of all the hard work we have ahead of us, especially in the coming year, we’re going to have to restructure things at home to make life work better for Howie and us all.  Kids like Howie crave structure, routine, and predictability, and Tim and I have to respect that and help him learn to function appropriately in different social settings.  What it might mean is for at least the immediate future, changes to our daily routine will be difficult for us.  I’m not saying that we won’t be visiting people or wanting visitors to come here, but within the confines of those changes in routine we’ll need to factor in some familiar routines for Howie and stick with them.  I’m hoping that you’ll all understand and help work with us to make that successful.
So that’s it in a nutshell.  We know things could be worse, and we know that all of these things make Howie who he is, and we can’t and won’t expect him to be someone he isn’t.  While we aren’t looking forward to all the hard work we have to do, we are looking forward to seeing the positive changes in our family.  Thanks for helping us get there.

I sent them this e-mail to give them the “out” – to let them know that if they didn’t want to spend time with us or have their kids around Howie, I would understand.  It would make me sad, but I would understand.

To their credit, none of them stayed away.  At all.  And as I got brave enough to tell the rest of my extended family, their response for the most part has been the same.  They are still here.

I know I’m lucky.  And I know that this isn’t typical.

I know that for a lot of families struggling with special needs, their immediate and extended families aren’t the most understanding or supportive people out there.  And for them, they’ve had to create new families of friends and caregivers who can be there when needed.

Which leads me to this.  Two of my friends are about to go through some major changes in their lives.  One friend’s husband is being deployed in two weeks.  For a year.  Another friend is having major surgery and will be off her feet for quite some time.  Both friends have boys on the spectrum.

These are incredibly strong women who are about to change their whole parenting mindset.  One will become both father and mother, picking up the activities that used to fall to her husband.  The other will need to give up much of her motherly responsibilities in order to focus on her recovery and her health.

At our last support group meeting, we asked them how we could all help.   What can we do to make things easier?

These were questions that neither one could answer right now.  They didn’t know specifics about what they would need.  They both just wanted to know that we all would be there if and when they did need us.

And as new members of their families, we will.

Friends are there to plan playdates, organize carpools, and bring over wine and chocolate.  Family is there to do laundry, walk the dog, pick up prescriptions and be on call in the middle of the night for emergencies.  Friends are there if you ask them to be, family is here when you need them to be.

It may not be “blood is blood”, as my Grandpa said.  But sometimes, the family you create can be just as good or even better than the one created for you.

Grandpa Leo

My Grandpa Leo

Everyday(everday) should be(should be) a family reunion
We should speak
From the heart
And let love be the solution
Let us forgive (forgive)
Put the past out of the way(put the past out of the way)
No time to wait (no time to wait)
The time has come to give love everyday” – Everyday (Family Reunion) by Chaka Khan, Gerald Levert, Yolanda Adams and Carl Thomas

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