Tuesdays always start on a bright note.
This is the day I take Carson, 4, to Easter Seals. Carson is developmentally delayed and does not speak and receives weekly services there.
Although he is non-verbal, it’s easy to have a conversation with Carson. He understands everything and is effective at expressing himself through other non-verbal means and limited sounds.
His disability makes him different than most kids his age. He knows this, but does not seem to be terribly troubled by the social limitations. It’s Pam and I’s hope that eventually he will speak, but we are realistic in knowing it’s not going to happen immediately.
While we pray his disability will not be life-long, we accept this is a long-term issue rather than a short-term matter.
I have shied away from writing about Carson’s issues in detail here. I have started writing several times, but stopped after really not knowing what direction to go. Rather than overthink it, here’s the deal.
Carson, who like his older brother, Beckett, 5, was adopted at birth, has a rare chromosome disorder called dup7. Through state-of-the-art genetic testing and a host of doctors’ appointments, we were able to learn over the winter why he has not developed like his brother and fallen short of major milestones. The easiest way to understand it is he has too much genetic material on chromosome 7 and studies have shown this causes global developmental delay, particularly with speech, and results in learning difficulties. There’s much more to it, but that’s it at its most simplistic.
Because of his special needs, Carson has been going to school ever since he turned 3 years old. He is enrolled in the early intervention program currently at Ocean City Elementary School. He went to summer school last year and will be doing the same this summer. He will be entering pre-kindergarten in the fall. At school, he receives speech and occupational therapy services.
Additionally, once a week, Carson receives speech, occupational and physical therapy services at Easter Seals, which works with children and adults with disabilities and/or special needs.
Every Tuesday morning, Carson and I leave the house at 7 for two hours of individual attention at the Easter Seals office in Salisbury.
Pam did this for over a year until new work obligations shifted the responsibility to me. I’m thankful this has fallen to me because watching him work with his therapists provides me a weekly dose of inspiration, which I value tremendously.
Inspiration keeps me focused, rational and balanced. It forces me to live in the now and be grateful for the blessings in my life, rather than fixating on matters out of my control and obsessing on certain aspects that may not be falling into place the way I would like on a daily basis.
While life’s negatives are impossible to ignore, I find through my children that I am able to look beyond them and maintain a big picture philosophy. It helps at work and at home.
This doesn’t mean I’m living in the clouds. Stress and pressure are realities of life, but I prefer to focus on today rather than obsess about months from now.
Perhaps that’s the greatest lesson I have learned from Carson. Being the parent to a special needs child is challenging and full of exciting ups and daunting downs. There are questions and concerns all the time and moments of extreme frustration and immeasurable rewards.
It’s a roller coaster ride, but it’s not unlike the swings that all parents endure. It’s just more challenging. Patience is a necessity. Expectations must change. Uncertainties, obstacles and confusion are the norm.
However, what I see at Easter Seals each Tuesday reminds me how lucky we are. Carson is showing progress and his shortcomings are getting the attention they need. He works incredibly hard and I get to see that every week. We are lucky there are signs of improvement and that’s a huge source of inspiration for me.
At Easter Seals, I see parents raising children with disabilities so major they will never be independent, never be able to say “I love you,” never be able to walk and never be able to kiss or hug. It’s amazing how they handle what they are facing. The first instinct is to pity them, but you quickly see the love and joy. They are cheerful people, despite what must be an exhausting, overwhelming and sad life at times. The have unconditional love for their children just like all parents, but their lives are not like yours or mine. It’s beyond anything any parent can handle. That is until it happens to you. It’s so much work and takes so much energy, spirit and patience.
Every time I am at Easter Seals I think about a passage titled “The Special Child” that Pam and I both have on our desks in prominent places.
It’s by an unknown author and reads, “The Child, yet unborn, spoke with the Father, ‘Lord, how will I survive in the world? I will not be like other children, My walk may be slower, my speech hard to understand, I may look different. What is to become of me?’ The Lord replied to the child, ‘My precious one, have no fear, I will give you exceptional parents, They will love you because you are special, not in spite of it. Though your path through life will be difficult, your reward will be greater, you have been blessed with a special ability to love, and those whose lives you touch will be blessed because you are special.”
For sure, Carson does not have “exceptional” parents. We are lucky to be his parents because he brings great joy to our lives. We are just like any other parents with strengths and faults. We just happen to have a son with unique needs, which we will forever meet, no matter what the future holds. That’s an easy promise to keep.