The Best Christmas Present Ever!

When I found out I was pregnant at the tender age of 35 I was at the middle of a good career in commercial insurance, raising an 8 year old daughter and in the beginning stages of divorce.

Once we found out we were pregnant, we tried to reconcile, but it just wasn’t a healthy marriage for me.

When Bella was born prematurely, I was only 5 months along. That was the longest winter in limbo.  I also decided to give up my career in the face of the long road ahead raising 2 girls, especially with one facing an uncertain future.

Many questioned the decisions I made, including giving up a lucrative career, divorcing during pregnancy,  moving from a large city and moving  back to small town North Carolina, to surround myself with my village of family and friends.

When Bella was released from the hospital she was tiny. We didn’t have a home of our own, but my family opened up the doors wide for shelter and support.

Those early years getting Bella to her many Dr appointments and specialists were my top priority. My 8 year old had to grow up fast helping with bottles and diaper changes and tagging along to Speech, Occupational and Physical therapy along with treks to the Shriner’s Hospital in Greenville, SC for Bella’s cerebral palsy issues that affected her walking.

Back then, I felt guilty for all my oldest (we call Cookie) had to give up. Yes, the guilt weighed on me. Was I overlooking Cookie’s needs in order to focus on Bella?

I did the mom thing. I signed her up for basketball and cheerleading and tried to spoil her with material things. Cookie loved being able to be active in sports. She didn’t always like that, if I couldn’t find a trusted family member to watch Bella, meant either we chanced Bella having a meltdown from the noise or lights, and had to leave early or mom just had to let someone else take her to her practices and games.

As a single parent, especially if one of your children is special needs, we all face guilt or try some form of compensation for the other child or children. When the dreaded comment “ It’s always about Bella”  came from Cookie’s mouth, my heart broke for her, myself and Bella.

How do you explain to a child that she will have the privilege to grow up, have friends, drive, date, move away, and be an adult,  while Bella probably never will.

So yes, my life will always be about caring for Bella, but a mother’s heart also cares and prays and fears, for her other children to go out into the world solo one day, does it not?

This Christmas, Cookie gave me the best gift ever. No it wasn’t the Kate Spade purse or the expensive jewelry and makeup she spoiled me with. It was these words:

“Mom I have this nice apartment, a good high paying career at only 22, because of you.

All the times I had to get a “no” or adapt to a situation and see the decisions you made, although others didn’t understand it, with no apologies, and putting me and  Bella first, showed me how to be a responsible, compassionate adult. I’m not spoiled like some of my friends, because of the team you and I had to become, for my sister”.

Those words were a balmy and salve to my heart and soul.  Our children watch us. Not just hear us.

As parents of a child with an exceptional need, may bring  some guilty feeling within. We may question like I did, how do my other kids feel. Cookie is an adult now. I worry about her living  on her own, in another city,  more than I  worry about Bella, because Bella is always safe, with me a bedroom away.

In the beginning, I was just putting one door in front of the other, praying I was making  the best decisions for myself and both my girls.

It’s been an ever changing journey, but I wouldn’t change a thing after getting the best Christmas gift ever,  in Cookie’s words. I will let her continue to believe the Kate Spade was the best gift of the year. But my heart and spirit beg to differ.

~BBF

Playing with Autism

My 25 yr old son,  still likes toys and movies that are age appropriate for a toddler or small child.  I say that, as it is not appropriate for a 25 yr old man to play with cars and airplanes, or to watch Disney movies.

Watching Buddy play with all of his favorite toys, I always thought of him as being “childlike”.  But while sharing one of my many “Buddy Stories” with a co worker this week, my perspective changed.

If you set a  neurotypical 25 yr old  man alone in a room with Hot Wheels, how long would it take for him to start playing? 30 minutes…15….5??

How many grown women get excited when their little niece asks them to play Barbies?  <raises hand>

Buddy will play with his Hot Wheels, and the retired Marine next door, just bought a ’67 Corvette…is that not a toy??

The only difference is that my neighbor  can

1. afford and drive a Corvette and

2. he WILL play with Hot Wheels cars, if he thinks that no one is looking.

I think about all the dad’s with little boys,  and how they always buy them the cool toys cars…how often do you think that the dad is secretly looking forward to playing with them…well, with their son AND the cars.

I flashback to a Christmas many years ago,  my brother D.  who was about 10, had gotten a Figure 8 Race Track.  We played with that thing for hours upon hours during our childhood (he probably still has it).  But we didn’t play with it on Christmas.   On Christmas we sat on my bed and played with his new tape recorder (see, I told you it was a long time ago!) And the first recordings that we made, included the background yelling and cheering of our older brother R (he was about 20) and my father, as THEY played with D’s Figure  8 Race Track for HOURS upon hours.

So this all broadened my perspective,  I have been enlightened, my son DOES play with age appropriate toys. And that tickles me!

~ASM

 

Where do we go from here?

You just got the official diagnosis…PDD NOS.  What next?

You begin to process the emotions as you look up letters that meant nothing to you a few days ago.   Pervasive Developmental Disorder-Not Otherwise Specified…what the hell does that mean…today…tomorrow and beyond?

Today, it means your heart is broken. That little child that has won your heart and soul, is suddenly disabled. You start looking up everything about autism trying to find a slight glimmer of hope that with medication, education and prayer, he will suddenly wake up one day (soon) and be perfectly normal and everything will be hunky dory.

The more you read, the more depressed you get. You go through a mourning that you never imagined.

The doctors flip flop between experts on autism, and the run of the mill doctors that say things like “I will need to call his psychologist, to see if he is breathing through his mouth because of the autism.” and “You know more about autism, than I do.” When you don’t need to be an autism parent, to figure out that your child is breathing through his mouth because he has a stuffy nose…DUH!

As the years go by,  you come to terms with the beast called autism. You have all of the therapists, IEP meetings and doctor’s appointments on the calendar. You have it all under control, or so you thought.  Then you see other children his age, doing age appropriate things…sports, bikes, making the principal’s list, dating, driving preparing for college.  All of these milestones of your child’s peers  become nails through your heart.   At first, these days come rapidly.  But as the years accumulate, the days come less often, and you may even realize that you haven’t crashed into a pile of pillows in months or even years.

Then once your child becomes an adult, you have a whole new set of concerns…what now?  He’s out of school, he is unable to work, he cannot be left unattended, he may even be incontinent.   Do you keep him home with you?  Do you try to find him a nice, safe, group home?  Is he happy?  Does he feel loved?

Even though our journeys are parallel,  they are not the same.  No one can walk your mile in your shoes. But we can hold hands, and offer shoulders to those walking beside us.

I would like to offer these words,  don’t measure your child by anyone else.  Don’t ever let your child know that you are disappointed.  Always encourage your child to do his very best and you are proud of his accomplishments, even if he is 17 and just mastered making his bed (incidentally, this task is usually not mastered by the typical 17 year old)

Always, tell him that he is loved, assure him that you know he understands, and he is trying.  And above all, make sure that he knows that you are his biggest advocate and fan.

Eventually, you will be okay.  And when you are not okay, reach out to someone else on the path and let them know.  You are not alone, just look around, and you will see others reaching out to you too.

~ASM