It Is Not How It Looks

It is a well-known fact that Facebook posts are carefully chosen to showcase how wonderful our lives are.  We post our children's sports victories, school awards, prom pictures, and weddings.  I do it too. Let's be honest......we all do.  I love to see your best times and your beautiful families.  Very seldom do we see a picture of a child having a meltdown or punching a sibling.

I am going to suggest that parents of children with special needs are most guilty of this.  I know I am.  We want our kids to have typical experiences and milestone moments as much as anyone else.  We want our kids to enjoy the school assembly, the birthday party, and the holiday traditions like every other kid.  But they don't.

This point was made clear to me during our annual family outing to the pumpkin patch yesterday.  Angela was excited about the trip and talked about it with anticipation all week long.  The reality of the trip was that she hated almost every second, starting with getting her boots on at home before we left.  That was a screaming, foot stomping disaster.  She did not want a pony ride, a tattoo, face painting, or to shoot a pumpkin through a huge gun.  Her protests made her feelings very apparent to anyone nearby.  She grudgingly picked out a pumpkin with Josh and Levi encouraging her.  By the time we left, she was begging us to take her home.  We did get one picture of her having fun:

Angela did not enjoy our last trip to the pumpkin patch, either.  If I dig through my memory, I would probably realize that she never has.  I did recall her monster meltdown and the school Fall Carnival last year and we, wisely, skipped it this time.  Angela also is not a big fan of trick-or-treating and we limit her exposure on Halloween.  But the pumpkin patch..........it is a family tradition.

What to do?  We love our family tradition, but it is probably not worth it to make her miserable over it.  Special events and activities are major problem for every other family I know who has a child with special needs.  We are all struggling.  I am not saying this to make you pity us.  It is just something that many people take for granted-the ability to enjoy family outings without upset.

 I will still probably post our happy pictures on Facebook, because they are real.  They just do not tell the whole story.  It is not how it looks.

Choosing Hope

I came across one of my favorite quotes today.  Christopher Reeves, who I admire for his courage and strength, said, "Once you choose hope, anything is possible".  Hope is one of my favorite words, and yet often I forget to practice it.

It is easy to get overwhelmed by the phone calls that need to be made and the appointments and referrals and therapies.  Medication, orthodontics, homework, and stretching routines.  My job, college classes (what was I thinking!), and elderly parents.

 I am grateful for the team of people who teach, care for, and encourage Miss Angela.  There so many!!  When I am distracted, they are not.  I am humbled when I receive phone calls, texts, and emails about something new that Angela's school team wants to try.  It is almost always a strategy to give her more independence and to advance her ever-growing skill set.  And, it is almost always something I did not consider possible for her.  It happened this week and I had to consider whether I have been holding her back. with my distractions and my concerns.

I don't mean to limit her, I really don't.  I, of all people, know how incredibly amazing she is.  How far she has come.  I just think of her as needing a lot of help.  In some ways, she does.  But it is time for me to realize that she is very able in so many ways and she wants to be independent.  This weekend, Toby and I came downstairs to find she had made us coffee!!

I thought that I was pretty progressive and well-informed about Angela's needs.  Now, I realize that it is time to stop worrying about regression and the return of seizures, or worse.  Time to hope and time to celebrate.  And to be grateful, so grateful, for the people who ignore what could be and focus on the girl in front of them who can do pretty much anything she decides to do.

All of the Lasts

As a parent of a high school Senior, I have entered the year of the lasts.  The last first day of school, last Homecoming Dance, last basketball season.....you get it.  I have been here three times before but it does not get any easier.  In fact, maybe it is harder because I know how final the end of high school really is, despite the great things that can come after.  My child has started the leaving process.

There is so much going on in all of our kids lives right now.  Really good things.  I will share more soon, but for now I will focus on Josh and helping to make the next few months meaningful for him and for our family.  Some you have known Josh for years, and some only know him from knowing me.  Let me tell you about him....

Josh is the kindest boy I know.  Really.  He has empathy for other people and he LOVES his family.   Josh is everyone's friend.  He does not compete for attention, and he is as humble as they come.  His love and compassion for his younger brother and sister has been known to bring me to tears.  His nephew's hero-worship of him is endearing.

This week is Josh's last Homecoming week.  He gave it his all and even sported a tutu for the Homecoming game:

And then, tonight, was his last Homecoming dance:

I look like a little old lady, don't I?  Well, I may be but I still have a few more years of high school dances left in me!

I am going to treasure this year.  I have enjoyed every single moment with this boy, since the moment he came into our home and our family.  He stole our hearts the very first day.  This is not a year to grieve, but a year to celebrate, and to make every single "last" the best one yet.

Breaking the Glass Ceiling

When Angela had her brain surgery six years ago we had so many questions.  Even though she was only three years old at the time, one thing I really wanted to know was, "Will she read?".  As an avid reader, this was really important to me, although not as important as having her overcome seizures and live a healthy life.  Or having friends, or walking and talking.  But, I wanted to know.  The doctors were not willing to make any predictions because each child responds to major brain surgery differently.   I would have to wait.

Since starting Kindergarten, Angela has made steady pre-literacy gains each year.  She eventually learned the letters of the alphabet and by second grade last year she could recognize a few sight words-and a few more by the end of the year, but it felt like there was a glass ceiling on her reading.  We could see what was possible up above but she couldn't quite get there.  Or could she?

Until recently, we have not pushed Angela to do homework.  Just getting through the school day is so exhausting for her and she is often asleep by 5:30 or 6.  We recently decided to have her read and write a few sentences each night along with the rest of her third grade class.  I am hoping my video posts here so you can hear what I heard tonight:

If you do not have tears, please check your pulse.  This milestone is proof that ANYTHING is possible.  Never give up on a skill or a change that seems to be taking too long.  Angela's school team made a huge investment to make this happen.  When traditional teaching methods weren't working, they found a better way for her. They cheered and encouraged, and they will continue to support her progress.  This has been a team effort that Toby and I have watched from the sidelines.  We do not take any credit.

In the words of Walt Disney, "The difference between winning and losing is most often not quitting."  Angela Hope Harris never quits.  The daily tasks that we take for granted, just because we can, take tremendous effort for someone with Angela's challenges .  Dressing, bathing, eating, walking, learning-it is all hard.  And she Never.Gives.Up.  This girl is my hero.