Life Under a Microscope

Quick survey. Do you like talking about your weaknesses? Nobody? How about when other people constantly analyze your every move? Silly question, right? Or worse yet, how about your child’s weaknesses being the topic of conversation at meetings and magnified constantly? Doesn’t sound like something any parent should have to endure, right? Well, any parent that has had their child evaluated for services or been in an IEP meeting can relate. It has always felt like Jackson lives his life under a microscope. At an IEP meeting recently, I was reminded several times about the dreaded microscope that magnifies and distorts. Jackson will never escape his every action and personality trait being over-analyzed and connected to his diagnosis.

Everybody has their strengths and weaknesses but most of us don’t have our weaknesses magnified, brought to the attention of teams of specialists and tracked with data. It’s human nature to focus on our individual strengths while working on our weaknesses behind the scenes; we never lead with our weaknesses. As a parent of a child with Down syndrome, my son’s weaknesses are always discussed. And then there are parts of his personality that are talked about as if they are a weakness but in reality are just part of who he is.

Jackson happens to be very introverted until he feels comfortable. If he did not have Down syndrome, I bet he would be considered shy like I’m sure several kids in his class. Instead, Jackson being shy can be perceived by people that don’t know him, as he can’t talk, he lives in his own world and he isn’t social. None of which are true, by the way.

You might have heard the stereotype that individuals with Down syndrome are always happy. Jackson is a happy boy, but he is not always happy. (Nor are any of the individuals with Down syndrome that I know) He has a full range of emotions that include: frustration, being overwhelmed, and anger. Those emotions are brought on by his environment, stress or tiredness. He, like the rest of us, should be allowed to have a bad minute, hour or day.

Raising a son with Down syndrome feels like a constant tug-of-war. The world focuses on and dissects his weaknesses and we magnify and celebrate his strengths.  

Don’t get me wrong, I understand evaluations are necessary and weaknesses must be discussed, but life under the dreaded microscope can be daunting.

One of my favorite quotes is from Alvin Price, “Parents need to fill a child’s bucket of self-esteem so high that the rest of the world can’t poke enough holes to drain it dry.” This is a part of my job as a Mom that I take very seriously. For our kids with Down syndrome, I think it is even more crucial because they are much more susceptible to people and situations that make holes in their buckets.

We know Jackson is delayed, but we choose to focus on all the amazing things he accomplishes. Every day we take advantage of the many opportunities to fill his bucket of self-esteem. We will continue to put his successes under our microscope and focus on those!

 

 

 

A Very Special “Happy Birthday” Song

This school year has been a rollercoaster ride; scary, exhilarating, and there have been moments I’ve felt like I was going to puke. But at the end of this school year, as with every rollercoaster I’ve ever ridden, I will appreciate the ride, feel a sense of pride for accomplishing it and, I won’t be as scared for our next rollercoaster ride (1st grade)

Last week we had some low moments. The lowest of which was a comment from one of the individuals that work with Jackson. She said, “Jackson is around the other kids, he isn’t with them.” Those words still sting as I type them, but hearing them for the first time it felt like I had been stabbed in the heart. I anticipate the joyful day when I hear about one of his friends at school and hope and pray for friends that will be with him for the rest of his life. Just because Jackson is shy and content to play on his own, that does not mean he does not know what is going on around him. And just because Jackson talks less than other kids, doesn’t mean he isn’t listening. In fact, Jackson is the best judge of character I have ever met. He also has a keen awareness of non-verbal communication and tone of voice.

As with other moments on this journey, our rain storm this week was followed by a rainbow. Jackson, along with other kids that participate in programs at GiGi’s and would later use the toys, was invited to GiGi’s Playhouse to accept the gifts that a seven-year-old girl was donating. She had asked her guests at her birthday party to bring gifts for the Playhouse instead of birthday gifts for herself. Just being a part of this event was magical. She was so generous at such a young age.

Of course, pictures of this sweet moment were a must. All the kids and the young girl were on the stage with the beautiful blue gift bags filled with toys and games that would be donated to the Playhouse. I was a bit nervous because Jackson loves to unwrap gift bags but, I stepped away and just watched. I wish I was better about having my camera at the ready, but I seldom do, and this was no exception so I wasn’t actively involved in taking photos. (Thanks to another mom for capturing the sweet moment) I will admit, I was a bit of a stage mom telling Jackson to “say cheese.” After a few minutes of photo-taking, the most special moment happened.

As cameras were still going, Jackson spontaneously turned around to the girl that had brought the gifts and confidently started singing “Happy Birthday” directly to her.

Singing “Happy Birthday”

In the midst of all the hoopla over the gifts and getting the perfect photo, Jackson brought it all back to what was most important, wishing this generous girl a happy birthday.

We weren’t there to celebrate the toys or for photos. We were there to celebrate this girl who was so generous to donate all of her birthday presents. Jackson understood that perfectly and brought the focus to her.

Reliving the moment back in my mind, my heart bursts with pride at how Jackson never once turned around during the “Happy Birthday” song. He wasn’t putting on a performance. He was genuinely wishing his new friend a happy birthday. He understood fully why we were there and was reminding all of the adults that got caught up in taking photos and talking about all the amazing gifts of the real reason. And in true Jackson fashion, as he has done before, he was showing me that inclusion is working for him. He is building his confidence and independence to participate fully in his life.  And, it was as if he knew what had been said of him earlier that week and he was trying to heal my heart. I could not be more proud of Jackson for his many accomplishments, but most importantly for his heart of pure gold! I love having a front row seat to watch his confidence and independence grow. (and to prove all those doubters out there wrong!)

You Are One of The Lucky Few Whose Life is Better With Your Child If:

In your child’s eyes, you see a world of possibilities, not a diagnosis.
You wish things were easier for your child but,
Wouldn’t change one single thing about them.
You overlook weaknesses and celebrate successes, big and small!
Negative remarks from an IEP meeting replay in your head and rip your heart apart, piece by piece.
You hold back tears as teams of specialist discuss your child’s weaknesses, but refuse to stay silent because,
You are your child’s voice, a passionate advocate, and their biggest cheerleader!
You constantly doubt yourself and the decisions you make for your child but,
You are strong, confident, assertive and refuse nothing less than the best for your child.
You’d do anything to see your child smile,
And wish you could take away all the ignorance in this cruel world.
Your child has made you a more caring, open-minded and accepting person.
You constantly second-guess your words or actions on behalf of your child and
Ask yourself daily, “what more can I do to help my child?”
You want your child to have the high quality of life they deserve so badly it hurts.
You visualize the best case scenario but,
Prepare for the worst possible outcome.
Your heart bursts with joy with every spontaneous hug or kiss.
To your ears, you child’s voice is the sweetest sound in the world and,
You waited longer or are still waiting to hear their first word.
Your child says everything without saying a single word.
You have experienced higher highs and lower lows than other parents.
You know you are one of the lucky few,
and you know that without a doubt that your life is better with your child.