Pool Party
January 2006, Chicago, Illinois
By Christina Deanne
I sat that cold January afternoon by the diving board watching our coats. Mark, his sister Grace, and his little brother Vic were at the other end of the high school pool holding on to the side. My husband Marty was with them on this scouting party. A line of 9-year-old boys waited to jump off the diving board in various positions of cannonballs and all-out belly flops. They shivered as they left the warm water and padded with wet bare feet to the back of the stairs leading up to the board.
I watched them and a ball of sadness rose from my stomach to my throat. It finally settled in my mouth, which twisted oddly as I tried not to sob. Hot tears filled my eyes and I got up to go to the cooler bathroom. I walked in the stall and began to cry.
It’s not fair. It’s just not fair. I put on my pity party hat and sat down to celebrate with myself.
Mark has a condition known as Asperger’s Syndrome, which is a high-functioning form of autism. The symptoms include insistence on sameness, impairment of social interaction, restricted range of interests, poor concentration, poor motor coordination, academic difficulties, and emotional vulnerability. Translated into real life, it means that without a written schedule, Mark would have an emotional meltdown every time his teacher moved on to another subject.
His difficulty with social interaction makes it very hard for him to look you in the eye and, in some cases, to answer a simple question correctly. When he was 2 years old, he had a fixation with numbers; when we would read Dr. Seuss, he was more interested in the page numbers than the funny pictures. He has the body of a normal 9-year-old, but has the hand/eye coordination of a 4-and-half-year-old. After kindergarten, the birthday invitations stopped.
The troop leader began to test the skills of the boys. Mark held onto the side of the pool and stayed close to Marty. Mark yelled and I heard it above the other’s voices.
Many of these characteristics seem like they include many children. They can, which is why experts now use the term ASD, or autistic spectrum disorder. The range of the disorder may include obsessive-compulsive disorder, autism, and, in special cases, ADHD.
In Mark’s case, my husband and I really didn’t notice any problems, just a nagging suspicion. He was extraordinarily bright and we had him evaluated by an early childhood program. Mark looked like any other boy; his disability was and remains hidden.
One day when he was 4 years old, I happened to watch “ABC’s News Program 20/20” and there was a segment on hyperlexia. Hyperlexia is a specific type of learning disorder. A hyperlexic child may be able to read or decode high school level words but have the comprehension level of a preschooler. Their verbal skills could be impaired as well; sometimes they might use words inappropriately or have difficulties answering simple questions.
Hyperlexia can be associated with Asperger’s Syndrome. When I saw this special, I knew Mark had this disorder.
Collecting myself, I walked over to check on them. Mark was upset at his little brother for something and my daughter was swimming a few strokes under the water. Marty looked at me and sighed.
Just the name autism used to strike fear and devastation into my heart. I always pictured autistic children sitting in the middle of the room rocking back and forth. Not my bright little boy who read and told time when he was 3 1⁄2. Not my cute little son who could count to 100 and read the words, “Drive thru Pharmacy” at 4 years old.
However, when he reached kindergarten we knew that something was terribly wrong. He would have crying meltdowns twice a week or more. He couldn’t concentrate on his school work. I expected the diagnosis as Asperger’s Syndrome; I, after all, had read all about it. More of a social problem than anything and a few learning problems, no big deal. I didn’t flinch or cry when they told me at the meeting with the specialist who evaluated him, while his teacher, the nurse, the speech therapist, the social worker, the psychologist and the principal looked on. I was prepared.
The troop leader waded over to Marty and Mark. Marty shook his head and the leader waded back towards the group away. Mark was too preoccupied to notice his leader. Mark would not participate today.
I did not expect the sorrow. I could hardly contain it, and I had to with two other little children. The beautiful days of enjoying my younger children flitted by as I struggled to get through each day. I was alone in my journey, with little connection to anyone under similar circumstances. Oh, I went to Bible studies and found love and sympathy, but no comrades. Not for many years.
Kindergarten passed to first grade, then second, and now third. Mark’s brother and sister grew, and soon there were no more babies in the house. But there was no more bitterness, either. When I had come to the realization that I was powerless and that I could not fix this condition in my son, I felt better. The bitterness that had both kept me together and ate at my soul slowly left me. I was able to see the sun again.
There were days, though, when the waves of sadness washed over me. Little things bothered me. His lack of a social life mirrored my own struggle as a child. Watching him stand alone waiting to go inside the school felt like a knife in my heart. The yearly meetings were exhausting and heartbreaking, particularly with the physical education teacher. We had to work with the school to help him overcome the fear of loud noises and his obsession with numbers.
My heart, a mother’s heart, cried, “What will become of him?” and “Why?” - knowing that there would be no easy answer.
So there I sat, watching. The boys going in and out of the water. Waiting for their buddies to get in line. Yelling at their friends on the diving board and laughing. How lovely it would have been for him to have friends like this; I wonder what it would have been like if only….
My son is with his father, hanging on the side, his younger sister and little brother at the opposite corner of the pool.
It was finally time to go, and I walked over with the towels. I was uncomfortable, dressed in a sweater for a cold day, not a pool party. Besides my hat, I now had pity party balloons, noisemakers and special confetti that dissolved into tears. I throw a great party.
As I stood waiting for the kids to come out of the water, my husband looked up at me, beaming. “Mark put his face in the water and held it there for several seconds. Isn’t that great?”
I put my hat away.
Christina Deanne is a stay-at-home mother of three children. Since first publishing this article with The Imperfect Parent, she has found support both online and in her community. For more information, visit her blog, http://aparentspectrumdisorder.blogspot.com/
Posted by Elizabeth Armstrong Moore on Monday, April 30th, 2007 | Email This Post
This entry was posted on Monday, April 30th, 2007 at 12:03 am. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.
12 Responses to “Pool Party”
Leave a Reply
NOTE: Please submit your comment only once. It will have to be approved by the administrator before it is posted.
April 30th, 2007 at 7:35 am
My niece, Nikki, was killed in a car accident Feb. 17, 2007. She had just turned 23 one month and three days earlier. She was autistic. I suspect hyperlexia may have been a part of her life as well.
We have grieved her death so intensely, there are days it seems the pain will never leave, and will only grow more harsh from day to day.
One small comfort has been that when she died, she was, in her own words on her MySpace that morning, “blissfully happy.” In fact, she wrote enthusiastically, “I’m the happiest I’ve been in my whole 23 years.”
Thanks for your touching, heartbreaking story. It was beautiful.
Donna Rich
April 30th, 2007 at 8:01 am
Ms. Chris D,
Nice flasback, reality and bravery. And acceptance. You sounded like a Pro. Congrats! There is more, however, that is personal to my own feelings and that is imagining you with all the pain and love and concern for the future especially for Mark..But you are a brave young lady. Tis a bright thing that you put your pity hat away. Don\’t ever think of it again. (Two trails always in our lives. Right or left, sun or gloom. The option is ours).
Keep writing! IT\’S GOOD FOR THE HEART.
Annabelle
April 30th, 2007 at 9:24 am
Thank you for your comments. Donna, that is my ultimate goal for my son, that he would be happy inside. I am so very sorry for your loss; I read your words with tears in my eyes.
Thank you, Annabelle! And I agree 100% about the writing!
April 30th, 2007 at 12:04 pm
As a fellow mommy of a special needs child, I can totally relate to your pain. Thank you so much for writing such a candid tale. For those of us who have children who don’t show their disability outwardly, it’s difficult to be subjected to outsiders huffing and puffing out of their own ignorance. My youngest still is undergoing tests to find out what is wrong with him and he is seven years old. Anyone who goes through what we as mommies go through in this regard, has a special crown in heaven. Great writing! Keep it up!
April 30th, 2007 at 12:43 pm
Marti-if you can, let me know. You can post a comment at my blog, which is moderated, if you like.
April 30th, 2007 at 5:15 pm
Awesome insight here reminding us to appreciate the small miracles of every day life. We all throw pity parties once in awhile–thanks for being brave enough to share one with us, and showing us how to end them.
April 30th, 2007 at 6:10 pm
Thank you for sharing your honest feelings. It is so easy to be sorry for ourselves. As a teacher, I thought of one particular student as I read your story. This story will help me, I think, to remember how parents feel. These children can be frustrating, but those of us who love them need to focus on their enormous gifts and help them do the same.
May 1st, 2007 at 6:38 am
I know you. I don\’t know you. I know about Aperger\’s because I\’ve \’talked\’ to you but I don\’t know Asperger\’s, not really.
I know you are are a strong parent. Not many are these days. That statement could get me into trouble with some, but it is an honest statement. What I know of you and your husband I can honestly say that you are loving, giving, but most of all normal.
I don\’t have children Chris, so I\’m not sure I have the right to comment here, but I feel my two cents are worth mentioning. When I say \’normal\’ you react much like parents with healthy children, so how can you be so different. How can your child?
Yet, you and your family are marked \’different\’ because you have a special needs member in your family. You get frustrated, you cry, you love, you wonder, your fret. What sets you apart from the norm is that you relish each little thing your child does. Putting his face in the water makes you want to run out and buy him a medal. This child has taught you a different behavior and it shows in how you extol the achievements of his siblings, not just him.
It takes special parents to have a special child. This I\’m sure of. I know you are special, it shines through in your writing. It shines through your love.
The future is uncertain for him but no more uncertain than tomorrow or the next day. He put his face in the water, you put your hat away. That shows courage at its best for both of you. God knew what He was doing when He gave this child to you.
Be well my friend.
May 1st, 2007 at 9:54 am
Thank you, Jessie. And Yes, I know you too but I don’t know you as well!
Thank you for your kindness. As one of the other stories said, there are High highs and low lows with an aspie kids. Speaking only for myself, some of these highs and lows are because of my ridiculously high expectations of him and my other children.
How I wish I could be a friend to the lady (me) in that bathroom because I would be able to tell her the good things that are ahead.
I appreciate your comments very much.
May 2nd, 2007 at 6:54 pm
Jessie:
Well done. Hooray for telling your story. I am the mother of Chase in one other of these stories, “The Gold Medal” and I’d like to tell you that yes, yes. There are so many wonderful things ahead for Mark. We just found out that our son Chase has a girlfriend!! Now that was something completely unexpected, but why not?
May 29th, 2007 at 10:24 am
Your story sounds so similar to mine. My Son Nick, now 20 was first diagnosed with PDD at age 4. Like your son, Nick was spelling words from memory, taught himself to read and drawing in 3D. Around Age 7 or 8 , I was first introduced to Hyperlexia via the internet. I traveled from WA State to U of I where a seminar on Hyperlexia and Autism was given. Several years later he was rediagnosed with Asperger’s Syndrome, which seem to fit him more appropriately.
When Nick was first diagnosed we were told to put him in a separate school for children with disabilities. We refused and he was put into an integrated classroom. Nick struggled with sensory integration, echolalia and auditory processing, but with the help of wonderful teachers he thrived in a regular classroom setting with an aide on hand. We were also told that Nick would “never live a regular life” and probably end up in a group home. Today at age 20 Nick is a College Student and has held a part-time job for nearly 2 years. He did not disclose his Asperger’s in either case. He is also driving. While he is not “cured”, he has outgrown alot of the behaviors.
June 29th, 2007 at 12:30 pm
Nice follow-up to this story:
http://aparentspectrumdisorder.blogspot.com/2007/06/ronns-miracle.html