Almost Normal

The past couple of weeks homeschooling Emily has been amazing. We have gone to three Jubilee events, the mall and various appointments. That may not sound that unusual, especially for a homeschooler, who often engage in more extra-curricula activities. But when your child is special needs with sensory processing disorder, this is a major milestone.

To give you an idea of what life with Emily has been like…The day before we took her out of school at the end of the day she ran out of the classroom and was almost out the school gate when a friend of ours stopped her. The teacher and assistant had not even noticed. But it was not just them. She would open the front door to our apartment and run out into the hall.

About two months ago, I had stopped at her nursery to visit and do a bit of work on their newsletter. When we were done, the manager brought us home in her car. While I was trying to unload our bags, Emily jumped out and ran around and around, dangerously close to the road. It prompted a lecture on health and safety from my friend.

As a result of these and other incidents, I bought a harness and a leash. What’s more, we stopped going out, except for emergencies and doctors’ appointments. We were virtually housebound by her behavioral issues.

Then in February, we began the process of weaning her off the new medication that the doctors had put her on last fall. It was a slow process, taking almost three months. But in addition to her sleep patterns returning to something approaching normal, I noticed a marked improvement in her behaviors. While she was still more impulsive than other children her age, it was no longer a safety issue. When I called out for her to stop near a road, she would listen.

Then when we visited her doctor he increased the dosage of Sodium Valporate, the medication that we had originally been prescribed for her epilepsy. Back in March, I had attended a conference presented by Young Epilepsy. One of the speakers had mentioned that at its highest doses this drug could have a mood stabilizing effect. But I never expected this!

On Saturday, her dad and I took her to a Jubilee party near my house. There were crafts to make and things to buy. She had tea, made a crown and a butterfly. Then we found the face painter. There was one little girl in the chair and another one waiting. Then after a few minutes, two other girls (sisters of the one in line) came over. Now the wait was going to be longer. Emily began to protest, getting louder each time that the girls refused to acknowledge her place in line. In the past, this situation would have escalated to a full blown meltdown with Emily kicking and screaming on the sidewalk. Her father and I yelling at each other and us carrying her home where she would continue to cry until she was exhausted and fell asleep.

But not this time. Thanks to this higher dose of medication the pause between action and reaction is lengthened in her just enough for me to be able to respond with behavior management techniques such as distraction or reasoning…and for her to respond to them. This time I choose distraction. We were lucky the fire truck had just arrived. I pulled her aside; she protested at first but then decided to go with the flow. While her dad held our place in the face painting line, we took a ‘ride’ on the fire truck, got a coloring book and then discovered Mr. Pineapple Head the Clown. By the time Dad called to say the face painter was ready for her, Emily was so content I had to pull her away from the clown. We got her face painting and went back to the clown without incident. Mr. Pineapple Head even selected Emily out of the audience to spin plates. The happiness and sense of accomplishment that she had from that was priceless to me as the mother of a special needs child for whom accomplishments do not come easily.

What’s more, when we suggested going after the clown she agreed, noting that she was getting tired. We walked through the market and I even stopped into a store to get something while she and her Dad got an ice cream.

Now I know that none of this sounds all that special. In fact, for millions of parents out there this is common everyday events. They might even get cross at their child for not having more patience in the line for the face painter. But when your child has sensory processing issues and a myriad of other special needs, when that child has temper tantrums that make World War II look mild and interfere with family life, this ‘almost normal’ day out is miraculous. A moment to treasure and a memory to hold onto on those days when we are not so lucky and those meltdowns rule the day, our lives and the family.

For all you parents of ‘normal’ children out there, give them a hug and thank whatever force you believe in that your child and family do not face these challenges. And for families like ours where every day can be a struggle, there is hope…even if just in single moments and accomplishments. Hold onto them and our special child with love.

This post is dedicated with special thanks to my friends at HE-SP who held my hand, offered support and advice back when things were not going so well. Thanks to them I discovered things like Collaborative Problem Solving and SPD.