What Time Is It?

What Time Is It?

I often don't know what time it is in my own house.  That is because I live with Matthew, who has a special talent for pushing buttons on the microwave clock to change it.  He also unplugs the digital clock in his room then plugs it in again (I know, unsafe) so he can watch it flash 12:00 over and over.  Recently, he has begun climbing on a shelf in our kitchen to reach the large wall clock so he can rearrange the hands on that.  I look from clock to clock, wondering, what time is it?   While I am fixing the wall clock, he is changing the time on the oven clock!  

Matthew is literally pushing my buttons (on my clocks, phone and on my dwindling patience) every moment of the day.  We try to distract him from doing so by hiding iPhones and iPads in the tallest cabinet in the kitchen - hoping and praying he won't drag a chair over to that cabinet when I am in the bathroom, and double checking, triple checking the digital clock in his bedroom before kissing him good night to make sure that it has the correct time but more importantly that the alarm is not going to go off at midnight because he has pressed THAT button.

It's hard to "recharge" ourselves living in this environment.  I can't recharge my house phone, or leave my cell out to charge while Matthew is home...but most important, it's hard to recharge ME when I live in anticipation of Matthew's next move.  Will he interrupt the washing cycle on our washing machine?  Those buttons are fun to push because they "beep".  While I am in the laundry room, what will he get into?  Let's see, I remembered to hide the phones, the computer is in a good hiding place, I think I have my bases covered.  Nope!  He found the TV remote and is deleting my favorite show, Parenthood, as I exit the laundry room.

As a mom of a child with special needs, I always have to be "on". Remember back when your child was 18 months old and you were exhausted because you had to be "on" all the time - you could not take your eyes off your child because who knew what he would get into next?  What would he put in his mouth?  What would he touch? An electrical outlet?  Poop?  That is what it is like living with Matthew.  No, he is not 18 months old, he is 8.  While his peers are out there skateboarding and learning to snowboard...creating with Legos and going to indoor lacrosse practice, Matthew is...pushing buttons.  

On the bright side, all this button pushing is getting him ready for a future in electronics.  Last week, he found my old laptop hidden away in the mudroom closet.  It had not been used in 2 years.  He asked if he could use it.  Why not, I thought?  I plugged it in, got it charging and discovered there was no icon for the Internet, so I told him it was just for typing words.  Within 20 seconds he said, "Look, Mommy, I'm on Yahoo...how do I get to Starfall from here?"  (his favorite website).  

If you met Matthew for the first time, he would engage you with his warm smile and ask you his repertoire of questions.  While you answered him, he would reach in your pocket for your phone or keys and in a split second, he would delete an app or push the panic button on your car keys.  Watch out, next time he might change your clock somehow and you won't know what time it is!

The Lows and the Highs

When you are raising a child with a disability, there are so many reminders out there of the life you thought you would have, but do not have.  There is one word for this - it's HARD.

Matthew and I were taking a walk down our street, and we saw some of our neighbors, 2 young girls playing jumprope independently.  With no parents watching.  Two sisters, in their own driveway.  While I have to watch every single move Matthew makes.  He will probably never jump rope, but that, to me, is not the sad part.  The sad part and the hard part is knowing that he will not gain that type of independence and neither will I.  He has to be watched constantly.  Walking away from the neighbor's house, I am welling up, trying to hold it in.  My neighbor gets to fold laundry, read a magazine or just "be" while her girls play.  I am jealous (no, not of folding laundry) but of the freedom and independence those girls and their mom have, and because I have to fold my laundry and wait to feel like "me" until after Matthew is asleep.  

I was picking up Matthew from Unified Sports after school.  What a beautiful program filled with typically developing peers and kids with special needs coming together in the gym to play sports.  When I arrive at school he is happy, tired, and I know he feels good about being a part of this program.  It's all good.  Then as we are walking to our car, a very kind and polite 5th grader who is a role model in the program says good bye to Matthew.  Matthew replies appropriately and his mom says something to me like, "Peter was partnered with Matthew today", with a big smile.  I smile back, say thank you, etc.  But all I can think as I buckle Matthew in his seat and take a deep breath to fight back the tears is - that was supposed to be me - the mom of the kid who helps others.  The mom of the polite scholar athlete.  But that is not me.

Even though my life as a mom is SO not what I ever imagined, there are many moments each day when I know I was meant to be Matthew's mom, and so proud that I am.

If I were to write a letter to Matthew, it would go something like this:

Dear Matthew,

There was time not so long ago that I worried constantly you wouldn’t be able to speak. Now, you talk too much – and strangers are even beginning to understand what you are saying!  I am so proud of you for working so hard all these years in speech therapy – but most of all, I am proud of you for the joy you spread to others. My heart swells in happiness when I see the smiles you put on strangers’ faces several times a day.

"What’s your name?"  

"Where are you going after this?"  

"What time will you be home?"

"When is your garbage day?"

These are the questions I hear you ask the woman who works at the grocery store cash register or at the library check out desk each time we go to these places.   You surprise people with your deep smile, and inquisitive nature.   Thank you, Matthew, for allowing me to witness the surprising joy you give to others – and the happiness you put in my heart.

Love, Mommy

Celebrate Good Times, C'mon!

Happy Garbage Day!  Matthew celebrates everything - from "Happy Monday" to "Happy December", he looks for the positive and wants to wish everyone a "happy" whatever day it is.  On the first day of a new month, he tells me that he can't wait to get to school so he can wish his teachers a "Happy December".  When we woke up on December 3rd last month, he was the first one to say "Happy Half Birthday, Daddy".  He calls his Nana everyday, and 3 days per week he wishes her a "Happy Garbage Day" (yes, she has garbage or recycling pick up 3 times a week!), and on Fridays, he calls her to ask, "do you have something to say to me?" and of course, Nana's response is, "Happy Garbage Day, Matthew".

Matthew is teaching us the value in celebrating the small things that usually go unnoticed.  Garbage day, a new month, a half birthday, - he is genuinely excited about these events, they mean something to him and he wants to share his happiness with others.

As a baby and toddler, Matthew had 8 different early intervention providers helping him  work on developmental skills that he was not meeting on his own.  Developmental Delay is what they called it when he was a baby.  From the age of one till he was three, our doorbell rang 14 times a week for the sessions Matthew had with speech therapists, physical therapists, occupational therapists and special education teachers.  These amazing women provided the hope I needed that one day Matthew would walk and talk - and they provided for Matthew their expert skills in helping him get from step A to step B.  Most importantly, I think they showed us all how to celebrate the small successes that turned into meeting milestones.   I have these patient, understanding and intelligent women to thank for instilling in Matthew a love for celebrating.

One such celebration that we worked on during the early intervention years (and beyond) was blowing.  For children who have a speech disorder like Matthew, any mouth movements are difficult and unnatural.  We worked on blowing for over 2 years.  We wanted the blowing practice to be really motivating for Matthew, so we used a candle in a gluten free pancake and sang "Happy Birthday".  We would do this a few times a week for years - and several times a day during the weeks before his birthday.  His eyes lit up every time, he loved the singing and the excitement of pretending it was his birthday, but he just could not get the blowing pattern down.  Finally, one of our speech therapists suggested we cut a straw down to about 3 inches, and put it in his mouth - it worked!  He was blowing out his candles!  Now we really had something to celebrate!

 

 

 A few weeks ago, Matthew at age 8 learned how to independently zip his coat.  He is SO very proud of himself and expects a full on applause each time he zips.  He has a twinkle of happiness in his eye when that zipper goes up, and takes pride in doing so independently.  Time to celebrate again! 

"The Look"

It was April 2005.  Matthew was almost 9 months old.  I had called "Early Intervention" to come evaluate Matthew because he was not yet sitting and our pediatrician said that he was now out of the range of normal for that milestone.

Two evaluators, a physical therapist and a teacher came to take a look at Matthew's gross motor skills.  In our family room, they held him upside down trying to evaluate his protective reflexes.  They tried to get him moving, crawling, sitting, to no avail.  It was plain to see my baby was bombing this test.  
They told me there on the spot that he would qualify for PT (physical therapy) twice a week.  No, I was not surprised.  All my friends' babies the same age were pulling to a stand and cruising.  Matthew was just starting to roll around  So - this is great, right?  They will make him walk and then he'll be all caught up.  

So, I ask, "how long does PT last?".  
The response is "the sessions are 45 minutes long."  
"No," I reply, "I mean, for how long will Matthew get the PT services?"

(In my mind, PT is something that lasts for about 6 weeks.  My experience with PT thus far in life has been to help with a sports injury - and after about 6 weeks, I was healed.)

I clearly expected there to be some sort of cut and dry answer such as "we'll have him walking by Christmas," or "about 3 months should do it".   So that's when it happened, the 2 evaluators gave each other a look that may have only lasted 2 seconds, but so much was communicated in that look.  

One of them kindly answered, "Usually, children who receive PT or any services through early intervention will receive that service until they age out of the program at 3 years old."

"Oh - not my son - he's going to be a lacrosse player or hockey player - he won't need PT for that long," I silently thought and believed. 

But there was a small part of me that recognized that 2 second look between these evaluators that said "this mom does NOT get it".  They were so right, I didn't get it.  And it took me a long time to get it.