Archive for March, 2011

Zagats For Beginners

Monday, March 28th, 2011

Today’s gift:  an unexpected Three Musketeers Dinner (me, J and M) at Panera.

The three of us had a delightful dinner — and dessert too — at a local Panera.  Spontaneous and last-minute!? Somehow, without planning and without advance notice, M was able to go with the flow.  And J always likes restaurants.

Sure the food ratings, decor and service didn’t meet the Zagat Guide Standards, but even ratings in the 20s couldn’t have made our impromptu dinner more fabulous.   And, as M will tell you,  Panera bakes a mean shortbread cookie.

Sweat Shop (MSCSL Post 1, Year 2)

Sunday, March 27th, 2011

Today’s gift was an easy find:   M successfully participated in his first Karate Tournament after having to wait OVER TWO HOURS FOR HIS TURN!!!!!!!!!!!!!!

M did his Kata and he did it well.  And with a smile on his face.  We are so so so proud.

We almost didn’t make it but after massive amounts of sweat (mine mostly but also my husband’s and my parents’), blood (yes, M scratched me and J and drew blood) and of course tears (of worry, joy, concern, relief, pride).

I’d do it all again in a heartbeat!  Well, minus the sweat, blood, and almost three hour wait.

Sharing: Tissues Recommended

Wednesday, March 23rd, 2011

A dear friend shared this email today and I am passing it along just as I received it.

It’s today’s gift for those of you going through withdrawal (like me).  Get out your tissues.

Subject: A message to schools (esp. for parents of little ones)

Imagine the following: for as long as you can remember, nearly everything you do is observed, evaluated, scored and categorized.   All of the things that you are “good at” are put in one column.  All of the things that “need work” are in another.  This is not done just once; it is a life-long process.

Now imagine that all of the things you are good at, and perhaps even enjoy doing, are considered non-essential because “you can already do them”.  Everything else, all the things which are difficult for you, that create stress or pain (either physical or emotional) becomes the major focus of nearly everything that goes on in your life.

This is in many ways the life of special needs child if they are lucky enough to be receiving “services” in the community and/or in the school setting. And as the parent of a disabled child, it feels on so many levels, the right way to go.  Because we are afraid.  We are afraid our children will not get what they need, what will help them most.  That they will not be “ok”.  So you go along with this pathologizing approach to parenting where your child is looked at as a set of challenges, problems or in nicer terms, goals to be met.  And you see nearly everything in life as an opportunity to help, fix or improve the life your child lives, or even the child herself.  There is an underlying sense of urgency and hypervigilance that surpasses that of typical parenting that can be crazy-making.  You don’t buy a toy because it will be fun, you buy it because it will be “meaningful” or “therapeutic”.  You don’t pick activities solely for the love of the thing, but also for the “benefits” it can bring.

And it is almost all focused on things that “need work.”  Through it all you try to remain hopeful yet realistic about your child’s future, most of the time without any overt awareness that nearly your entire focus is on a half-empty glass.  And the message that is covertly being communicated to your child is “if you were just less disabled things would be better around here”.

And in the midst of all of this, you are dealing with professionals who you desperately want to trust because you hope with all of your heart that they know more than you (way more).  You want to keep them on your side because you fear any possible fallout toward your child.  But you don’t want to hand over all of your control because you have had to give up so much control already.  You spend your life trying to celebrate milestones which comes easily and naturally to other children, dealing with the irony that comes with the loss connected to that very celebration. Who else has to celebrate these simple little accomplishments?  That hardly seems fair (Fair? What’s that?)  But to not express gratitude seems even worse, and many people live in that place of being grateful for every little step.  I admire them and sometimes can even be like them.  But mostly what I am is tired.  Tired of the struggles, the sadness, the pain, the constant thoughts and machinations that go into figuring out and finding what is best for my child.

So to those of you to whom I entrust my precious child, I ask this:  Please be patient.  See the child, not the list of “issues”.  Trust that I know my child better than you even though I may not know what you know about how to help her.  Do YOUR homework.  Find out more about my specific child and her needs than just any special needs child.  If she has a diagnosis, read about it, learn the best ways to help her, don’t try to fit her into what you assume, what you have done before or what you may think is best.  Ten years into your career, please don’t assume that things are still done the same way; stay current. Our knowledge-base is constantly developing; things that were a given when you were in school may be seen completely differently at this point.  Understand that I know you want the best for her but partner with me about how to accomplish that. Don’t tell me what we are doing, discuss it with me. Honor my input. Don’t label my child or me based on limited information.  If we have a difficult interaction or even several of them, understand that no matter how fierce I may appear, or how timid, or whatever, I want the best for my child.  And I spend more time and energy on taking care of her and trying to make sure others do, than you can ever, ever imagine.  And please work with us from a place of caring and compassion, not just “what the district” offers, says, does, or requires.  I don’t care what the district says.  I only care about what my child needs.  If you try to see everything from that perspective, we will probably get along just fine. Oh, and don’t feel pressure to be “the one” who will figure everything out and make it all better.  That isn’t going to happen – this is a complex, lifelong journey and it is minimizing to think any one person is going to wave a magic wand or find a perfect plan without a REAL team approach.

Parenting a special needs child is the hardest thing I have ever had to do.  Trying to do it without the support and understanding of the people educating her has caused tremendous pain.  Doing it with that support and understanding impacts not only her schooling, but her entire life–and the life of our entire family.  If you have any questions, ask me.  If I have any questions, please let me know I am welcome to ask them.  And finally, I would ask that you do two things:  take this very seriously – there is a life at stake.  And at the same time, for the same reason, lead with your heart.

Anniversary Day: 365 Unexpected Gifts from Motherhood at My So-Called Sensory Life

Monday, March 21st, 2011

One year.

365 days.

365 posts.

365 gifts.

I’m thrilled so many of you joined my Virtual Celebration Today.  I loved celebrating our One Year Anniversary.

Thank you for your notes, emails, comments.  Thank you for your gifts — keep commenting on my Gifted post because I’ll do a future post about all of my readers’ gifts.  They are beautiful and inspiring and mean so much to me.

Today’s gift:   flowers (and a love letter) from my husband.

Remember this isn’t the end and it’s not farewell (you can’t get rid of me that easily!). Please come back soon:  I’ll post reflections on my year of blogging but tonight it’s party time at My So-Called Sensory Life.


Tour De M

Sunday, March 20th, 2011

Today’s gift:  M rode a bike without training wheels all by himself for the very first time!

Up and down the driveway he went, balancing and zooming as if he’s been riding a bike for years.

I know this is the beginning of a whole new chapter in my boy’s life.  He’s driving now and the road is limitless.

Go, M, Go!

This Is The Day

Saturday, March 19th, 2011

Today’s gift (two in one day!):  M and J both received The Sacrament of First Reconciliation.

The mass was beautiful and went smoothly for M and J.  It was a sacred and spiritual day and I am so thankful we were able to participate and all receive this gift.  Our family is blessed and I know we are not alone in our journey.  As my relatives say, I’m glad someone “upstairs” is looking out for us.

“Trophy, Trophy, Trophy!”

Saturday, March 19th, 2011

Today’s gift:  M won a Trophy for The Cub Scouts Pinewood Derby Race!

His custom police race car (built with love by M and Dad) was fast.  It raced with a purpose and won!  When M’s name was announced, he jumped, screamed, cheered and literally bounced to the stage to receive his trophy and certificate.  The crowd cheered and high-fived him with abandon.

All the way he chanted, “Trophy, Trophy, Trophy” and it was the only sound I heard in the noisy crowded room.

It’s hard to believe or explain to others that hours earlier at home M had refused to get dressed, told us he had changed his mind about the race and virtually shut-down because of the emotions and anticipation.  As his dedicated pit crew, Dad and I got him ready and gave him what he needed to give the day his best.

We all won today.  Victory is sweet!


Saturday, March 19th, 2011

It’s party time!

Monday, March 21 is the one year anniversary of My So-Called Sensory Life!  That’s 365 consecutive, daily posts in as many days.  And, of course 365 gifts.

That’s a lot of gifts!

I can’t think of a better way to celebrate one year than to hear about YOUR gifts dear readers.

Please post a comment by March 21 and tell me about an unexpected gift from motherhood (or fatherhood or grandparent-hood or auntie-hood or uncle-hood or sister-hood or friend-hood…) you’ve received.   I’ll pick my favorite gifts and share them on Monday with the MSCSL family.

In the days following the anniversary, I’ll announce plans, projects and places I hope the blog takes me next year.

I can’t wait to unwrap your gifts on Monday.  I hope you’ll join me for our Virtual Celebration.

Rise and Shine

Friday, March 18th, 2011

Today’s gift:  for the first time EVER (or at least that I remember!)  M slept until 7:00am this morning!

In fact, I had to WAKE HIM UP!!!!!!!!!!!!!!!!!!  Has this ever happened?  I really don’t think so…

In case you are reading this and muttering “huh?” what’s the big deal? — M wakes up at 5:00am sharp every morning (read about My Early Riser here and sometimes his eyes pop open for the day even earlier (4:30am, 4:45am).  Since I’m not a morning person, I find it mind-numbing to start the day early and avoid it at all costs.

When I woke up today, I thought M was in his room reading and that he just lost track of the time (he usually comes into our room at 6:30am to rouse us).  As I approached his door I saw that the lights were out (huh?) and he was snuggled up and sound asleep.  I almost did a Happy, Happy, Joy, Joy Dance right there next to his bed.  Instead, I did what any good Mom would do :  I carefully climbed into bed next to him and quietly woke him up with kisses and hugs.  It was a slice of heaven for me.  You see, I can’t remember the last time I watched M wake up (or that I woke him up).  It felt like I had traveled back in time — watching him rub the sleep out of his eyes, then stretch, and then smile at me.  It was a sacred moment and it  brought me right back to his crib days.  I can honestly say that one of my favorite times (still) is the morning with the kids and especially those short minutes when they open their little eyes to a new day.

I can’t explain with science or medicine why sleeping late is so significant for M. It’s just a gut instinct and something I know has meaning.   And so, I can only use Mom-speak to shout out that it’s a very big deal, another moment to celebrate, and an unexpected gift!

Smiling Irish Eyes

Thursday, March 17th, 2011

Today’s gift:  the Leprechaun visited our house for St. Patrick’s Day.

His mischievous antics (chairs on tables, open kitchen cabinet doors, general silliness) made the twins smile and laugh.  Their eyes sparkled while they ran around the house looking for the Leprechaun’s tricks.

This tradition started in Kindergarten at school and it’s become a fun family tradition.

He brings smiles and a little bit of that Irish luck.  Happy St. Patrick’s Day!