@ParkerMama: Parenting a Special Needs Child
Tammy Hodson used to have a "Kool-Aid house," you know, that house in the neighborhood where it seemed almost every kid in the neighborhood liked to play. Her five children kept her on-the-go, active in their schools, PTA's, and other activities. Everything was going great. Then, at an older age, she found out that she was pregnant. She was told that her unborn child had a 4% chance of having Downs Syndrome; she knew somehow that there was no way he would not have Downs. She was surprised, however, when he was born with chronic lung disease, a perforated anus, severe pulmonary hypertension, tracheal and bronchial malacia, holes in his heart, a tethered spinal cord, and severe reflux. Her life, and the lives of her husband and children, changed drastically.
In the almost six years since Parker's birth, Tammy hasn't gone out much, due to Parker's lowered immunity and the difficulty of transporting ostomy bags, oxygen bottles, and other gear. Many friends have stopped visiting her. She has gained weight. She hasn't slept much. She has become a "blackbelt in frugality," since difficulties with insurance companies and Medicaid have depleted their savings. Their other children have gotten used to not being able to do many of the kinds of activities they used to do.
But Tammy hasn't grieved, not when she was told that her baby might have Downs, nor any day since then. Most women do grieve when they're told they'll have a child with Downs. But the fact that Parker had Downs' did not matter to her or her family; as she says on her blog http://www.prayingforparker.com, "you can live a long and productive life with an extra chromosome!" She developed an attitude of outreach, hoping to increase awareness of what life with a special needs child was like. She started her blog, she helped produce content for another special needs site called http://www.5minutesforspecialneeds.com, and she became an advocate for the needs of her son and others like him in the public school system.
Has it been easy? No. Would she change it if she could? "No," she says emphatically. "My children are comfortable around anybody. " Her house, though not "Kool-Aid" cool anymore, has become a safe haven, a secure place where her family cherishes being together. Her self-confidence has grown. Her marriage has become much stronger. Her parents and community have helped in so many ways.
Today, Tammy home-schools Parker. She works on "living in the moment" with her other children, who are now 24, 22, 19, 15, and 12. She fights insurance companies and state senators for better coverage. She works to build bridges between families with special needs children and families with typical children. And she hopes that you will share her journey.