Will Your Special Needs Child Ever Achieve Independence?

Am I the only mother out there who looked forward to motherhood, but also looked forward to the day her child would eventually move out of the family home?

Lindsey and me - 1980

I can’t say I wished or even thought about my children moving away when they were babies. I loved cradling those seven pound eight ounce bundles in my arms; I loved singing and reading and nursing and burping and changing diapers too. As Lindsey and Michael grew, I beamed when they learned the alphabet, kicked soccer balls, built

Lindsey and Michael (circa 1980s)

sand castles, ran outfield on the Challenger's softball team, sang in choir, or played saxophone in the junior high band. I celebrated every season of my kid’s lives.

Lindsey playing softball with the Challenger's.

In many ways, Lindsey was a typical teenager who challenged every rule. She'd yell, stomp out of a room, slam doors. She talked about her anticipated independence from us. All. The. Time.

By the time her late teenage years cruised into view, my husband and I began fantasizing about the next phase of our lives and looking forward to some peace and quiet, to spending alone time with each other, or traveling the world. Maybe I’d even find and follow a new dream.

During Lindsey's outbursts, I’d daydream about her childhood, wishing that instead of singing traditional lullabies, I would’ve sung:

Rock a bye baby
In the tree top
When you turn eighteen
Don’t forget to move out

Initially, moving out of the family home didn’t seem to be an option for Lindsey. At least in my mind.  Not without lots of support.

For those of you who’ve read my blog, who’ve followed along, you may recall that Lindsey suffered a grand mal seizure when she was sixteen months; that she was diagnosed as mentally challenged when she was six. You might also remember reading that a doctor from Oregon Health Science University predicted Lindsey would likely live in a group home once she reached adulthood. I deliberately ignored his prediction. Instead, I made decisions I thought would best prepare my daughter for independent living, hoping she (like her peers) would gracefully move into adulthood. And because of her mental challenges, I wanted the comfort of knowing Lindsey could support herself if (when) something ever happened to us.

Throughout her life, Lindsey attended Silverton Public Schools. She was mainstreamed, taking regular classes such as home economics and music. Beginning with junior high, Lindsey spent part of each day in the special education department learning life skills. Silverton High’s Special Ed Program participated in an on-the-job training program, partnering with McDonalds and Silverton Hospital and Goodwill. For a couple hours each week, Lindsey job-shadowed different employees in a variety of positions.

Lindsey at Goodwill in the 90s

Eventually my girl secured a part-time job with two of these companies--working more than a year for each. Once Lindsey turned eighteen, a special education instructor advised and encouraged us to apply (on Lindsey’s behalf) for Social Security Disability benefits. They told us about other programs that might be available to Lindsey once she graduated high school and lived on her own: food stamps and low-income housing.

It is difficult for a mother to let go of a child's hand as he or she strides toward adulthood. It is even harder if your child has special needs. But there came a time when Lindsey no longer appreciated our advice. She didn’t want our assistance. She wanted to do things her own way, even when we were certain her actions weren’t in her best interest--just like most kids her age.

In Oregon, there is a program called Resource Connections of Oregon (RCO). RCO serves adult customers diagnosed with intellectual and/or developmental disabilities. The adult customers can live on their own, with family or friends, or in a non-state funded 24-hour living arrangement.

RCO’s services are self-directed and person-centered. In other words, the services provided will vary greatly from one customer to another. RCO’s goal? To help each customer live a fulfilling and productive life within his/her community.

One customer might need assistance with an ATM, cashing checks, grocery shopping, making change, providing transportation, helping cook meals. Another person’s needs might be entirely different. Once RCO determines the adult customer’s challenges, the caseworker writes up a plan, a contract. They determine the amount of hours the customer is allowed per month--based upon current funding and income. Finally, RCO finds the customer (a.k.a. Lindsey) a “service provider” (or each customer can find a provider on his/her own--which is the route we took).  All providers must pass background checks, drug tests, and have a valid driver’s license.


In order to comment on BlogHer.com, you'll need to be logged in. You'll be given the option to log in or create an account when you publish your comment. If you do not log in or create an account, your comment will not be displayed.