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Why Now?

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Why not earlier – when Henry was younger?  Certainly my recollections would have been much clearer, my emotions that much more raw and real, if you will….

Firstly, Al Gore and I had not invented the internet yet…. (hahaha).  At the time, I kept a “Gratefulness Journal”… remember those?  Sometimes I was very grateful for a bottle of wine in the larder!  I was so immersed and consumed with getting through each day that reaching out to a wider audience did not even occur to me.  How could I help others when I had no idea what the hell I was doing?!

I have been thinking about doing this blog for about 2 years.  I held back because I wasn’t sure that I wanted to relive it all.  It was a confusing, frustrating, heartbreaking (sometimes) and utterly draining (sometimes) experience.  It was also joyful, fulfilling and one of the happiest times of my life.  I absolutely loved being a stay at home Mom (or domestic goddess, or work without pay technician – although Brian would dispute the pay bit…)  I had also been fearful about being “responsible” for others’ problems or experiences….  There are so many out there whose situations are so much more bleak than mine ever was.  But – I can only hope that some story or tip that I might be able to pass on might help someone who is going through a similar experience.  I had a support system – my husband, my friends who “got it”, and intermittent help from my family.  What if you don’t?

You may have noticed that many of my stories have a humorous tilt to them.  First of all, I tend to see the funny in many situations – but – and this is a big but – I’m able to laugh at a lot of these old stories because I now know how the story has turned out.  Henry is doing very well – we are still married – and we didn’t damage our other child irrevocably in the process (at least, I don’t think we did – I guess we’ll find out if he’s going to therapy in his 30’s….)

Please let anybody know about this little blog if they are struggling with a challenging child.  Who knows… it might help!

That Old Familiar Feeling…

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When your child is entering a new phase of their life, there is always anxious anticipation – whether your child is “typically developed” (this is the PC way of saying normal… whatever that means….) or has special needs.  But there is a huge piece of the puzzle that goes into “our” children succeeding.  They have been nurtured, cajoled, supported and “therapied” to get to this point.  In Henry’s case, he has always been in a private, small and heavily supported environment.  And so, on Tuesday of last week, Henry and I attended an information session at Durham College put on by the Center for Students with Disabilities.  We were about to enter the “Bigs”!  It occurred to me at one point, that had he not had as many supports up to this point, we might not be in this room.

Before coming to this seminar, I had actively surfed the website of the college for information.  I had also called the school to speak to someone in the CSD (Center for Students with Disabilities).  I felt I was armed with the information necessary to convince Henry that he absolutely needed the services that were available – he was dubious, by the way.

The presentation began – 2 hours in the morning from various reps in the Center.  What was most interesting to me was a panel of students from the College who were presently using the services of the CSD.  One had “tried” college 2 times before and had been unsuccessful.  This time he used the services at the CSD and was doing very well.  The other 3 students talked about how helpful it was that they had emotional support as well from their advisors.  By the way, the CSD is set up to help anyone with a diagnosed learning disability, but also young adults who might have some form of mental illness, whether that’s anxiety or depression.  One girl spoke very openly about her troubles with anxiety and depression and it was hard to imagine this bubbly, engaging girl struggling with this.  Yet here she was!  A successful student who was actively involved in a sorority on campus.

After lunch, the kids and parents were separated to work in groups.  The parents were asked a series of questions – the most interesting one was:  “How many of you are anxious about your child coming to college?”  95% of us answered yes – no surprise… I almost snorted out loud – are you kidding me??!!  We have been actively, invisibly supporting our children for their entire academic career.  Now we have to let them advocate on their own – and some, like Henry, will also be living on their own for the first time.  The joke in our family has always been that once Henry gets accepted somewhere, Mommy is going back to school as well.  When we toured the residence, I joked that it was the perfect set-up for 2!!  Two bedrooms with doors, with a common area, kitchenette and bathroom to share.  I told him I’d keep him supplied with Cheerios, Tubes, bananas and Goldfish for his 4 years.  Everybody but him thinks it’s funny!

There is a lot of paperwork to fill out – intake interviews to attend – and I’m sure a lot of anxieties to soothe before September (both his and mine!)  But the point is – we are here!!!  I never would have thought it possible 10 years ago!  Have hope everyone!  You never know what might be possible!

MarchBreakFlorida

Hot sausage & mustard!!!  If you don’t recognize this, they are the lyrics from a song from Oliver.  Sounds like fun, doesn’t it?

We look happy in this photo, don’t we?  That’s because it’s before we’ve entered the restaurant!  Going out to eat should be fun, don’t you think?  A celebration of sorts.  But for us, it rarely is….  We were on the Perfect Chicken Finger Caper!  Applebee’s chicken fingers are no good….  Various other restaurants’ chicken fingers were no good…. The only thing that passes muster for him are McDonald’s chicken nuggets.

Let me set the scene…. Imagine a warm spring night in Florida.  The atmosphere is festive – there’s a band playing in the distance – there are twinkle lights all around – and we are looking forward to a delicious meal and full-bodied glass of wine.  We are on March Break in Sandestin, Florida and we’re taking out my parents to thank them for the occasional babysitting that they did while we were there (so Brian and I (he’s the spousal unit) could enjoy the occasional meal out alone and round of golf).

We are fortuitously seated at the back of the restaurant in a semi-private room.  Did they see us coming?  Do they know something we do?  haha  We get drinks and look at the menu. We ask about the kids’ menu.  The waiter explains that they use only the finest, organic chicken, which is then hand-breaded.  They have a gourmet, homemade chutney to go with.  We order the chicken fingers, plain spaghetti (no butter), and please, please, don’t add any garnishes to the plate or the game is up!!!  We ordered something slightly fancier for ourselves and my parents….

When the food came, you guessed it!!!!  Not only is there the fancy chutney stuff, but a SPRIG OF PARSLEY on the plate!!!!  “THIS IS YUCKY!!!!” yells Henry.  I think the patrons at the far end of the Intrawest village heard him.  So — we are onto Plan B.  There is always a Plan B.  Brian and I eat in shifts – and we doggy-bag most of the dinner to take home.

Henry eats Cheerios when we get back to the condo…. and is happy as a pig in s–t….

Why the Title?

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Henry did not sleep through the night until he was 3 1/2.  He would not nap unless he was in motion, either in a car, stroller or rocking chair.  When he did wake up from a nap, he would cry for at least half an hour.  He did not like to be swaddled and refused to wear mittens when he could throw them off.  He did not feel pain, nor was he bothered by the heat (or seemingly, the cold).  He had fevers often but would NOT take medication.  Transitions were hard.    He had special sensitivities to smell and sound, so a nice little Disney movie outing was a fantasy.  Forget about a trip to the specialty cheese store (or God forbid, the fish store)….  He was very particular about certain things, like how the hat went on his Woody doll.  Add to the fact that he did not acquire speech until he was 5.  So why the title, mypuzzledlife?  Can you imagine trying to figure out your child’s needs and wants under these circumstances?

The symbol for autism is a puzzle piece.  I think it is particularly apt…  Unfortunately, when babies are born, they do not come with a manual.  Figuring them out is a wonderful journey.  But when your child is autistic, there are a lot of pieces that are harder to figure out.

My mom and sister used to love putting together jigsaw puzzles over the holidays.  I didn’t seem to have the patience to do it when I was younger – if a piece didn’t fit, I would try to pound it into place, and then failing that, would lose interest and move on.  Henry is the most challenging, sometimes frustrating and wondrous puzzle I have ever worked on.  When one piece falls into place, there appears a bigger, more spectacular picture to behold.

Those of us who have children on the spectrum are continually working on our puzzle. What does your puzzle look like?

What to Do?

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Henry is biting me again and I don’t know what to do about it.  Now, before you think this is a “Fifty Shades” kind of adventure, let me give you a little more information…. Henry is my son, and he is 3 years old at this juncture.  And to throw a fly into the ointment, you need to know that Henry is autistic, but we don’t know this yet.

So, onto the biting.  He’s bit me a couple of times before.  When his older brother John did this (once), I took his little hand, slapped it, and very emphatically said, “NO!”  That was the end of that.  I had tried this with Henry with no success.  So, this time, I searched the memory banks and remembered that somewhere I had read this if you bite your child back (lightly… don’t get excited), they will understand that it hurts and they won’t do it anymore.  So, I bite his chubby little hand….  He stepped back, lowered his head and rammed me in the pelvis!  Direct hit!!

I don’t remember ever reading a chapter in any of the parenting books on kids that don’t respond to what you consider a reasonable response to a situation.  I was trying to navigate through very strange waters without a compass.

There is a happy ending to this story.  Henry is now 18 years old, has been accepted into college and is set (and excited) to leave in the fall.  I hope that our story will help many of you out there who are confused, worried or a little desperate.